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| Guest Book Entries |
| Name: Brad |
| Date: August 15th, 2007 |
Comments:
ב"ה Thank you Roger of Radar Hill Technologies for helping me put together this site for my daughter Shira!! |
| Name: Sammy |
| Date: August 16th, 2007 |
Comments:
I love you Shira!!! |
| Name: Sheila |
| Date: August 21st, 2007 |
Comments:
I LOVE the photo you have up of Shira, oh my Gosh Brad she is just so beautiful! I Love her smile... Hugs Sheila and Sky |
| Name: Kelly Takacs |
| Date: August 22nd, 2007 |
Comments:
Hi Shira! I wanted to stop by and say hi! Mommy was showing me your pictures! Love you!!! xoxo, Ethan |
| Name: Tammy Somerton |
| Date: August 28th, 2007 |
Comments:
Hello. I was asked to view your web page by my sister who is going to be your little angels nanny/ caregiver. I just felt the need to tell you my heart goes out to you and Shira. I have a 21 month old little girl. I know what a mother, and father goes through with loving their daughter. Desiree will be sooo god for you! Tammy Somerton, hugg |
| Name: Brad Fisher |
| Date: September 05th, 2007 |
Comments:
This is a test. We love you Shira. Love,Dad |
| Name: Connie Sacripante |
| Date: September 06th, 2007 |
Comments:
Hi, Thank you for the beautiful web site and for the HOPE. Our son, Daniel, is 13 months old and has SMA Type I. We appreciate your honesty and tips. The videos are great. I first saw Shira on YouTube. She is amazing! You are amazing! |
| Name: walid halik |
| Date: September 09th, 2007 |
Comments:
you won't believe how much we were inspired and deeply affected by shira's website. our daughter's case looks exactly the same as shira's. sophi is now seven months old and was diagnosed with sma type 1 three months ago. it is extremely rare case in lebanon and we are using the info from your website to convice her doctors there is hope. we have ordered the cough assist machine from the USA abd tomorrow we will start NIV... |
| Name: gina halik |
| Date: September 09th, 2007 |
Comments:
you won\'t believe how much we were inspired and deeply affected by shira\'s story and website. our daughter\'s case looks exactly the same as shira\'s. sophi is now seven months old and was diagnosed with sma type 1 three months ago. it is extremely rare case in our country and we are using the info from your website to convice her doctors there is hope. we have ordered the cough assist machine from the USA & tomorrow we are start NIV...god bless your family |
| Name: Charelle O\'Dunn |
| Date: September 10th, 2007 |
Comments:
Hi guys! I hope everything is going well with you and with shira. Give her a big hug for me, I miss her tons! |
| Name: Jana Gundy, Kyle's mommy |
| Date: September 22nd, 2007 |
Comments:
Hi Shira and family! I love seeing your videos and picture. You're such a doll! Kyle says hi and gives you a high five! |
| Name: Dean |
| Date: October 29th, 2007 |
Comments:
Well hello baby Shira! I met your Mom and Sammy at the swimming pool. She's told me lots about you. I had no idea you were so beautiful. You have the best mommy and daddy in the whole wide world! |
| Name: Linda Rosas |
| Date: November 09th, 2007 |
Comments:
Just stopped by to say hi to you all. Hope Shira is doing well! Love your site. Hugs from Princess Courtney. |
| Name: Angela Merimon |
| Date: November 16th, 2007 |
Comments:
Thank you for all you are doing. Your Shira is absolutely beautiful and I am very glad your family is not following what all the doctors tell parents to do--give up. That is absolutely not an option. Until my grandbaby, Laycee, was diagnosed with SMA, I have to be honest, I had never even heard of the condition, but I am fast learning about it. I am planning on trying to set up an organization in Dallas, Texas for families of SMA. I have a lot of research to do first, but we have got to get this condition widely known and really push for a cure. |
| Name: Mohammad |
| Date: November 23rd, 2007 |
Comments:
Hi to all Shira Family,I would like to contact you can you reply to my e-mail please |
| Name: Narayan |
| Date: November 26th, 2007 |
Comments:
HI,My name is Narayan Stevens. I live in Osaka Japan. I saw video of your daughter shira on You Tube. I also have a daughter who is going to be 4 years old next month. Who is also SMA type1. I understand what you are going through. You have my prayers and deepest sympathy. Because only the person who goes through this can understand about how helpless we are when it comes SMA.Your daughter is still in much better condition than my daughter. She can say some words. She can also move her hands to the direction you ask.My daughter can not say word but she makes sounds like ah..ah.. au. aawa. etc.She can smile when she is happy and she cries when she not happy. But she understands everything. She can\\\'t reply.I am just requesting for advice about what kind of rehabilitation you do with her. Here we don\\\'t have that system of rehabilitation for SMA children.My wife and I look after her at home. We only take her to the hospital once a month as there is nothing the Doctors can do. She uses BiPAP only at night. Thanks to Dr Bach and his book.I look forward to communicating with you. Thank you for taking time to read this.Kind Regards,Narayan. |
| Name: Robin Farber & The Steinberg Clan |
| Date: December 05th, 2007 |
Comments:
You are both truly special people with a very unique family. We are always thinking about all of you and wishing you the best!!! We want to wish Shira & Sam a very Happy Chanukah. All our love,The Farber- Steinbergs |
| Name: Sarah Turnbull |
| Date: December 23rd, 2007 |
Comments:
Hello! I just got through Shira's site. Very nicely done and some of the info will be great for the booklet we are putting together for our nurses. Thanks for sharing and hope your beautiful Shira is doing great! |
| Name: michelle perry |
| Date: January 02nd, 2008 |
Comments:
hi, my name is michelle and i am so proud that brad you are making people aware of your little girls disease. she deserves everyright to live, just like every other child. i will pray for her to be well and for miracles to happen. |
| Name: Mommy |
| Date: January 03rd, 2008 |
Comments:
I love you sweet pea!!!! |
| Name: sheila |
| Date: January 10th, 2008 |
Comments:
Hey guys I was just looking through all your pictures, wow!!! You have an amazing family :) Shira was a little chunk (she is so cute) both of your kids are just precious! many hugs and well felt wishes Shiela |
| Name: Alex Van Tol |
| Date: January 28th, 2008 |
Comments:
Hi Brad and Maxine - how are things? How is Shira doing? We haven't seen you at the park, but that's probably because winter has us in its grip...Your poem on the "journal" page made me cry. I know - or at least, I remember - those feelings exactly. Alex |
| Name: Lisa S |
| Date: February 09th, 2008 |
Comments:
What a beautiful website. I applaud you and your family's dedication to Shira's care and quality of life. Perhaps you could speak to the fact that each SMA Type I case has a unique progression. I had fraternal twins born July 2007 that both had SMA. Nicholas was so severe that he was diagnosed by 6 weeks and had passed away at 4 1/2 months even with noninvasive care. Olivia was diagnosed 1 week after Nicholas passed away and her progression was so rapid that she passed away at 6 months. I hope that Shira can continue to defy the odds and know that God will continue to provide you with the strength and joy you need. |
| Name: Cara Reilly |
| Date: February 18th, 2008 |
Comments:
I just wanted to send my love and strength to your family and Shira. We live in South Africa and we lost lost my little girl to SMA 7 months ago. She was 19 months old. What amazing children they are - just love and treasure her. Cara |
| Name: Nikki LeSire |
| Date: March 04th, 2008 |
Comments:
Hi Brad Maxine Sammy and Shira!I came upon this website, I thought you might have one for her. Good to see that she is doing so well. I miss you all and best wishes!!Love Nikki |
| Name: Jana and Kyle Gundy |
| Date: March 05th, 2008 |
Comments:
hey shira! hope you're having a good week! Are you tired of the cold yet? we are! i say springs, come on! Kyle sends his hi's! |
| Name: Andrea Smith |
| Date: March 15th, 2008 |
Comments:
Great site, Brad! (((HUGS))) to you, Shira and your entire family |
| Name: auntie abby |
| Date: March 19th, 2008 |
Comments:
Dear Shira,I loved going thru your picture album today - to see how you have grown and changed since that day your daddy held you in your arms is amazing. We love watching you grow!!Auntie Abby |
| Name: Auntie Winnie |
| Date: March 19th, 2008 |
Comments:
Hi Maxine, Wow! I'm completely blown away by your daughter's journey. My heart is with you all and I'm so glad you reconnected with me Maxine. I look forward to meeting Shira and seeing Sammy & Brad again. Beautiful Sammy looks like a mini-Brad and Shira looks like a mini-you! She's absolutely precious! Enjoy those delicious treats this weekend. Try to save one for me! Hope to see you all on Monday. With much love, "Auntie Winnie" |
| Name: stef |
| Date: March 26th, 2008 |
Comments:
Hi Shira,I was just reading all your previous posts' from your Dad and I see that you are getting a power chair!!! WOW, that's awesome:) We'll have to go for a walk one spring/summer day, once you get up in it and feel like checking out the beauitful Victoria Nature:) Talk with you soon! |
| Name: Tangela |
| Date: March 27th, 2008 |
Comments:
I found your video on you tube and it touched my heart. Your daughter is BEAUTIFUL!!! It is great that she has such wonderful parents!I am so happy to see how good she is doing! I am praying for Shira and your family. May God keep her in your lives for many, many, many years!!! I am praying and claiming that!!! God Bless your family!!! |
| Name: Esther Tauby |
| Date: March 28th, 2008 |
Comments:
Shira,You look adorable KA"H and I am so proud to see you growing and smiling. Love, Esther |
| Name: Izabel |
| Date: April 10th, 2008 |
Comments:
Hi Brad - Shira is beautiful and I hope my little "KittyCat" starts going outdoors like Shira very soon! I just loved the written protocol you created for Shira and I was wondering if you'd mind if I do something similar for my daughter Catarina (21 months - SMA Type I). Your family is amazing! Iz |
| Name: nate |
| Date: April 11th, 2008 |
Comments:
Just stopping in to say hey! Looking good, Shira! Always thinking of ya. ;) |
| Name: Jenna |
| Date: April 14th, 2008 |
Comments:
Hi Shira and Family,My name is Jenna and I came across your site. You are an inspiration and a brave, courageous fighter. You will be in my thoughts and prayers.I am from kamloops BC. Canada. One of my bestfriend's Jeneece Edroff lives in Victoria, she has NF disease, and my cousin and his family live there too.My site: www.caringbridge.org/visit/champ291 |
| Name: Anette Ceraficki |
| Date: May 07th, 2008 |
Comments:
Brad and Maxine - you are amazing for putting this effort into helping other families and also for creating this online celebration and documentary for your children. Shira is just lovely (as is Sam, of course!) - you are an inspiration. Deepest wishes for continued strength and faith, Anette |
| Name: Danielle Barry |
| Date: May 11th, 2008 |
Comments:
One of the most amazing web pages I have ever seen. It is packed w/ info and a very good ref. guide for new comers and for people who have been around a while seeking other regiments! Your daughter is beautiful and it appears you are very great parents to your childern! Just amazing and hopeful to families like ours who are just starting this process! The Barry FamilyJustin, Danielle, Alyssa, Sean and Karah: 13 month old SMA Type 1State of Kentucky, USA |
| Name: stef |
| Date: May 17th, 2008 |
Comments:
Get well soon Shira!!! Hope you get out to enjoy the nice weather soon:) |
| Name: Harriet Fisher |
| Date: May 18th, 2008 |
Comments:
Hello my darling Shira. I miss you and hope to see you soon when we are over our colds. I miss playing up & down with you and giving you love bites.When you say Baba my heart sings...I love you.Bubbe Harriet |
| Name: Roger |
| Date: June 16th, 2008 |
Comments:
Happy birthday, Shira. |
| Name: Jana and Kyle Gundy |
| Date: June 16th, 2008 |
Comments:
Happy 3rd Birthday Shira! We're very proud of you and your family. |
| Name: Stef |
| Date: June 17th, 2008 |
Comments:
Hi Shira, Happy Birthday yesterday! I hope you like the card I sent you by email:) Did you have a awesome birthday?? Did you get any cool stuff?? Your friend Stef |
| Name: bubbe harriet |
| Date: June 17th, 2008 |
Comments:
It was so much fun sharing your birthdy with you.Your my sweet little cuddle bug..Lots of love from Bubbe H |
| Name: The O'Neills |
| Date: June 17th, 2008 |
Comments:
Happy 3rd Birthday Miss Shira! The pictures are great--you're looking very happy and pretty! |
| Name: Sheila |
| Date: June 17th, 2008 |
Comments:
Love the Birthday pictures, you all look GREAT!!!! Big Hugs to Shira from Sky and I |
| Name: Jeanna |
| Date: June 19th, 2008 |
Comments:
Hope you had a wonderful birthday princess!! What a special day you had. (( Hugs)) Jeanna and Lizzy |
| Name: Aldís og Ragnar Emil |
| Date: June 19th, 2008 |
Comments:
Hi Shira! Happy birthday the 16th. Hope you had a wonderful day with your family, 3 is a big number, exspecially for a SMA girl like you. Ragnar is turning 1 next wednesday, we are all so excited.Hugs and kisses to you and your family from us here in Iceland.Ragnar Emil, Aldis, Halli, Silja and Siggi. |
| Name: germaime |
| Date: July 06th, 2008 |
Comments:
Hi Shira and family! Your website is beautiful and informative, especially for me, as my daughter Alvy is SMA Type I who is 6 months old. I am from Hong Kong and the support is minimal. After reading your website, I feel not alone, Alvy is now in ICU and is recovering from pneumonia, she is now on BiPAP and I am learning how to take care of her in future since she was diagnosed, thanks for having this website and sharing your experience, hope Alvy can make friend with you. |
| Name: Barb |
| Date: July 07th, 2008 |
Comments:
WOW! I have surfed the net off and on ever since my grandson was diagnosed with SMA many years ago. I just came across your site this evening. Thank you for the wealth of information. I will direct any newly diagnosed families to your site. Besides the information on SMA, I am interested in your story. I was unable to access the journal other than the last entry. I assume that's your choice?I'll be checking back regularly.Thanks!BarbPS I'm not leaving my last name nor email address only because I'm not sure whether they would be printed in your guest book as public information. Drew's parents choose to keep his last name, etc. private. |
| Name: Tami |
| Date: July 21st, 2008 |
Comments:
Hey Guys!! HAPPY 3rd BIRTHDAY SHIRA!! You look so great! We (miriam and I) would love to come by for that visit sometime if you still want us. :) Hope you four are all well! |
| Name: margaret booth |
| Date: July 26th, 2008 |
Comments:
Dear ShiraReading your website gives me hope as I have a five month old grandson Jack Nathaniel Lee who was diagnosed with SMA Type 1 at 2 1/2 months. I lost the will to live as my daughter(Jack's mother) and my other children are grown up and and I love Jack more than my own life. This is the first time I have written as I have read the site constantly and have printed off everything to give to my daughter to help her and Jack through this hell. Shira has given us inspiration and information as our Consultant was dismissive to the point of cruelty in the way we were told. She was brutually blunt and gave us no hope and no information and we were left crying and clinging on to each other in what felt like at that time a bottomless abyss.May we all receive miracles and blessings from whatever G-d we believe in.Thank you for saving Jack's life.Margaret |
| Name: miryam |
| Date: July 30th, 2008 |
Comments:
Hello Shira & Family!!!Great to see you standing! You look so tall! I love hearing all your new words and playing games with you, before you sleep. Tonight was especially sweet to hear you singing the songs all by yourself! Your family is doing an awesome job... keep up the good work! love miryam |
| Name: Stef |
| Date: August 01st, 2008 |
Comments:
Hi Guys! What an exciting summer you are having:) I just finished reading the updates and looking at the pictures. Shira, you are growing so fast, you are standing amazingly (and the fact you like the stander is huge!), I can't wait to hear how the power chair and eye gaze goes for you!! Hugs to you all. From your friend Stef. |
| Name: Stef from Victoria |
| Date: August 10th, 2008 |
Comments:
Thinking about you guys and all the other families affected by SMA tonight. I did the parade on the weekend too, to bad we didn't see each other. I know how public reaction and awareness is toward those with disabilities and medical issues. It get's to me as well, sometimes. You are always in my thoughts:) |
| Name: Jeanna |
| Date: August 30th, 2008 |
Comments:
Just stopping by to see how you are doing Shira. Hope you are loving your new power chair!! Hope you are having a great summer!! Many Hugs,Lizzy and Jeanna |
| Name: Jenna |
| Date: September 04th, 2008 |
Comments:
Hi Brad and Shira,I just wanted to let you know I am thinking about, you, Shira and your family. I am keeping you all in my thoughts and prayers.Sending smiles and hugs to Shira. |
| Name: Yonatan |
| Date: September 09th, 2008 |
Comments:
Brad,reading about Shira and watching the clips you posted introduced me to a completely new world of SMA. It also gave me a chance to get to now and learn just a tiny bit about your fantastic family and of course adorable Shira. Your story, your life and the way you strive with hope and happiness inspired me a lot. I think you two are amazing parents- I admire you for all that you have done till now for your sweet girl, and wish you only good health and happiness. Wish I could do anything to let you have some rest, do anything for Shira.Shana Tova,yours, Yonatan in Jerusalem. |
| Name: crystal |
| Date: September 09th, 2008 |
Comments:
may god bless you |
| Name: Yonatan |
| Date: September 11th, 2008 |
Comments:
Hullo there Fishers!Been thinking of you a lot for the last couple of days, and thought to hop in and say hi... I do think you are amazing! How is school Sammy? Doesn't it rock to learn new cool things? |
| Name: Geri Jacobson |
| Date: September 15th, 2008 |
Comments:
Hi Brad, Maxine, Sam and Shira,Just went through your website. Neat!Great pictures and info. Got a real giggle in several spots in your care directions, Brad, as I recognized from my many years of designing manuals for my daughter's care, directions/precautions included because what seems obvious to us who do daily care hadn't to someone - and that problem should NEVER happen again!!!! Given the great care she's getting, I think Shira is likely to live so long that her longevity will become a thorn in our Health system's side. And best of all, she's having a great a life with family and friends. |
| Name: Geri Jacobson |
| Date: September 15th, 2008 |
Comments:
Brad and MaxineJust read through your journal and found it very touching. Hang in there and keep breathing. Having lived through about 20 professionally-predicted immanent Michelle-demises,and three comas and their year-long subsequent somewhat-recovery periods with Michelle, I kept thinking "been there, felt that" as I read. Relationships with the rest of humanity in their rushing indifference/hostility do get easier. One gets a tougher hide -and learns to shrug. Of course, I admit to being arrogant enough to know I'm right and they're emotionally impoverished saps who will never have as rich or joyful a life as I have created with my choices and end up feeling quite sorry for the poor sods.A woman about my age, this summer after looking at M and asking her age commented that she kept me young. I'm not sure if she understood how true her words were for with M there is always something to be hoped for, worked for and of worth, at least to M, to be and do. A rare life gift. I'm sure it is the same with Shira. Geri |
| Name: Yonatan |
| Date: September 25th, 2008 |
Comments:
Have a beautifull Shabbat. |
| Name: Morgan Johnston |
| Date: September 25th, 2008 |
Comments:
Hey shira! Your growing more beautiful everyday I hope to come visit you soon!love Morgan |
| Name: rafi |
| Date: September 29th, 2008 |
Comments:
Shana tova shira.Love you the gelbarts |
| Name: leona stein |
| Date: October 06th, 2008 |
Comments:
dear shirasammy just came to visit us in florida withmommy and he looks great. I gave him hugs and kisses to give to you and daddy. sammy told me that you love to watch elmo and that you are getting ready for halloween.love aunt leona-+ |
| Name: Geri |
| Date: October 06th, 2008 |
Comments:
Hi Fishers,It's great to love rain, but I'm running out of walls to wash as M is not too enthused about going out in the wet. How do you like the rain, Shira?Hope you are all keeping well, especially you, Shira, and Sammy and Maxine had a good trip. |
| Name: Kenneth Mairs |
| Date: October 20th, 2008 |
Comments:
It's the first time I have actually seen the site. Take care for now and we will speak to you soon. Sorry I missed you guys last week, my work schedule is all over the place. |
| Name: Jessica |
| Date: October 20th, 2008 |
Comments:
hey guys, hope everyone is well and enjoying the autumn days. |
| Name: Nate |
| Date: October 22nd, 2008 |
Comments:
Hey Brad -- Stoppin in to say hi. I saw the recent picture of you and Shira -- She's looking great! Take care. :) |
| Name: Kate and Mary Nelson |
| Date: October 23rd, 2008 |
Comments:
Shira -We think you are such an adorable sweetheart! We hope you have a healthy winter and we hope all SMA families have a healthy winter. We loved seeing the picture of you and your daddy - you guys are sweet!Have a great weekend!Kate and Mary NelsonPS - GREAT website! |
| Name: kelly and Jane Coggins |
| Date: October 26th, 2008 |
Comments:
Hi!My sister found your website and forwarded the link to me. Love the site- Shira is beautiful! I am so inspired buy your family. My name is Kelly and I am mom to Jane Type 1 diagnosed at age 10 months. Please feel free to visit our site. Seeing how much great info you have on yours has encouraged me to put more on ours to help other families gather info. I talk to about 3 newly diagnosed families a year- I would like to direct them to your site. I just talked to a new family yesterday - a little girl 3 months. Shira I admire your courage- maybe you and Jane could become pen pals or Web-buddies. Take care! love, Kelly and Jane |
| Name: Michelle F |
| Date: October 26th, 2008 |
Comments:
Hello Fisher Family,My cousin and his wife recently found out that their 6 week old daughter could have either SMA or CMT3. We are all in shock over this and the only way I know how to help is to try and gather as much information as possible. I am so glad to have found this wonder site. I am encouraged by all that I've read and I hope to share it with them soon. (The test to confirm should be completed in 4 weeks.) Thank you for sharing Shira's story and that of your family. It is encouraging when right now it simple doesn't feel that way. Wishing you all the very best. Michelle |
| Name: Yonatan |
| Date: November 15th, 2008 |
Comments:
Hi Brad,I was sorry to find that your "Journal" stoped from being updated so abruptly. For people who are interested in Shira's struggle, the journal is one oh the best ways by which to keep us informed about how things are going.Hope you guys are bright, and I hope you'll have some time to drop a line for updates.Cheers. |
| Name: Sara Simon |
| Date: November 16th, 2008 |
Comments:
Hello Brad, I saw your journal entries at Simcha Esther's site and thought I would visit your web site to read about Shira. Your photos are so sweet and I appreciate the consciousness-raising of your blog, that you have the determination to teach the world through Shira's experience. Kol HaKavod to you for you relentless advocacy toward her diagnosis and care, may Hashem give you the strength that all parents need and more! Personally, we experienced a moving and life changing time this past year when our son was born with a heart defect, and after surgeries and two months in Children's hospital, thank God he is 11 months now and is recovering beautifully and is just a gift to all of us. We are in Seattle and would like to davin for Shira's health and healing. - what is her full Hebrew name and mother's hebrew name?All the best,Sara SimonSeattle, WA USA |
| Name: pam |
| Date: November 21st, 2008 |
Comments:
Iam a home care respiratory therapist who works with many sma children. It is one of the great rewards of my job to help these children live as normal as a life a possible. Thanks for making a website that sheds light on the life of a sma child. |
| Name: Nikki |
| Date: November 23rd, 2008 |
Comments:
Hi Shira Sam Brad and MaxineI love checking in on the site and seeing how great Shira is doing. It is awesome that she is now in school, I am so proud of her achievements, she is a little smarty! I am grateful for the opportunity I had to work with your amazing family. I hope you guys have a good flu season and everyone stays healthy!!Love you! |
| Name: Geri |
| Date: November 25th, 2008 |
Comments:
Loved your latest journal entry, Brad, and so glad to hear Shira is well. The daycare sounds like great fun and such a positive thing for both of you.Makes me feel guilty for my negative thoughts. |
| Name: Joel Spivey-Ethan Spivey SMA Type I |
| Date: December 05th, 2008 |
Comments:
Hello Shira. I hope you and your family are doing well. Just wanted to give you guys a shout out!! Have a nice day! |
| Name: Geri |
| Date: December 09th, 2008 |
Comments:
Hi Fishers,Hope you folks are staying healthy in our damp weather. Do you ever make road trips at this time of year? Ladysmith has done its traditional Christmas light-up and as more home owners turn on their decorations, it truly becomes a festival of lights as dark settles in. Although the motivation is commercial, I'll bet Sam and Shira would be delighted with the effects. How's school going for both kids? Can't wait for your next installment, Brad. |
| Name: Linda Rosas |
| Date: December 13th, 2008 |
Comments:
Get well soon Shira, you and your family are in my prayers. Hope you get to go home real soon. HUGS |
| Name: Tina MacIntyre |
| Date: December 14th, 2008 |
Comments:
Maxine and Brad, We just learned that your amazing little Shira has RSV and is in hospital. We pray that she gets well quickly. Please let us know if there is ANYTHING we can do. Love to you all.The MacIntyres |
| Name: david rains |
| Date: January 05th, 2009 |
Comments:
very informative site we are having trouble at the moment with the doctors at olivers hospital sheffield childrens hospital england.time and time again they do not listen to us as parents who know best but things will be changing |
| Name: Angie |
| Date: January 22nd, 2009 |
Comments:
Just found your website while searching for info on Vaso Vagal Nerve Response. Your story is amazing. Please check out my daughters site at www.caringbridge.org/visit/thechamp |
| Name: Geri Jacobson |
| Date: February 14th, 2009 |
Comments:
Hi Fishers,Good to read your latest entry, Brad,andhear how you folks are coping. Soooo, you've finally developed a muscle spasm below your right shoulder blade - a complication of the repetitive movements of caregiving that I find all too familiar. The swing sounds great!!! M has had a series over the years as she's physically deteriorated and always enjoyed hers and I'm sure Shira will find it quite delightful. |
| Name: Annette Swetnam |
| Date: March 01st, 2009 |
Comments:
Hi Brad and Shira! Love your site. I need to get cracking on a site for Betsy and Katie. |
| Name: Alistair |
| Date: March 18th, 2009 |
Comments:
Hi Bradgreat site - I am just starting on a site and hope you don't mind me linking to you as you have done a great job here. I will be focussing on practical things that helped our daughter Bethan (SMA1 severe) and the Bipap masks we used and the lack of them in the 1-3 age group. You are an inspiration keep up the good work. Regards Alistair. |
| Name: Michelle Laverdiere |
| Date: April 18th, 2009 |
Comments:
I am Woman now 41 with SMA2 ..I am an advocate ..I have progressed and am on a ventilator since 2003...I have use of 1 hand ande use an excellent mouse for little movement called Easy Cat USB Touchpad you can by Cirque for PC & Mac (USB)Model # - GP160U SeriesI use it with Free onscreen software by click'n type a 3 yrs is a good age to learn basics...My computer open a door for me when I had limited movement. I'd love to answer any qustiond..I put up some stuff on youtubr |
| Name: Melissa |
| Date: April 21st, 2009 |
Comments:
Hi I just wanted to say how happy i am to come across your site. I have just started to research Type 1 SMA. I have a niece Haylee she is 5 and a half months and we just found out that she to has Type 1 SMA. Although this has been very difficult , I am glad to see how beautiful and strong Shira is.She is an inspiration and helps me keep my faith! My god bless your family i send my prayers to Shira and her family. |
| Name: Lossen & Nai |
| Date: June 03rd, 2009 |
Comments:
Hi Fisher family, thanks for sharing your story. Great website, love to you and yours,Lossen and Naidu |
| Name: daniel & daisy |
| Date: June 07th, 2009 |
Comments:
Hi Shira,we are your neighbour, happy birthday in advance! wish you happiness, lovely girl, we'll see you at your forthcoming birthday party!! |
| Name: Adina |
| Date: June 09th, 2009 |
Comments:
Wishing Shira a happy belated birthday!(Josh & Abby's friend) |
| Name: andrea hofmeyr |
| Date: June 15th, 2009 |
Comments:
Happy Birthday sweetheart!!! Can't believe you are turning 4 years old tomorrow. You are growing into such a beautiful, clever girl. Hope you have a wonderful day - will be thinking of you! Big hugs, andrea xox |
| Name: amy |
| Date: June 17th, 2009 |
Comments:
Dear Shira,Happy Birthday!!! Rafi and I miss you so much!love,amy and Rafi |
| Name: Wendy |
| Date: June 20th, 2009 |
Comments:
I think the info you share on your daughter is fabulous! I have been caring for SMA kids for 11 years now, and parents truly need a resource such as yours! I love the directions for her caregivers! You did an amazing job! Wendy C., RRT |
| Name: Linda |
| Date: June 20th, 2009 |
Comments:
Hi Shira, I've been reading all the notes that your Dad writes to Simcha Esther, and he always talks about you. So I decided to come and see your website and watch some videos of you. Happy 4th Birthday! You're a precious little girl. May you & your brother & your parents have many more simchas together with you. (I'm full of admiration for you & your family.) |
| Name: Ashly |
| Date: June 20th, 2009 |
Comments:
Happy 4th Birthday Shira! I had met with you, your mom and your dad about working in your home back in January. I never forgot you, your family or your story. You are a very smart and sweet little girl. I hope you had a wonderful birthday and many more to come :) |
| Name: Jonathan Lewin |
| Date: June 27th, 2009 |
Comments:
Hey guys! Happy Birthday Shira! Sorry I could'nt make it earlier... Many BRACHOT and much SIMCHA to come! |
| Name: B |
| Date: June 28th, 2009 |
Comments:
Thank you for sharing your story. I am a nurse and am planning to begin to help a family with two girls with Type I SMA. The information you have provided is helping me prepare to do the best that I can for these young ladies. |
| Name: Frederick and Rebekah |
| Date: July 01st, 2009 |
Comments:
Hi Brad. I have a 1yr 6months old daughter diagnosed with SMA Type 1. We are living in Singapore and the medical support we have here is so far behind compared to US. No one knows how to use cough assist machines here. Your website and blog is superb and have the details I have been looking for months since Jul08. Thanks for makingg such precious info available online. Great job! |
| Name: Lisa |
| Date: July 04th, 2009 |
Comments:
Hi there,I received your website through Bill and Victoria Strong's site about Gwendolyn. I have been following there story for many months and have learned a great deal about SMA. However, I had no idea that here in Canada our medical system was such a shamble. You are doing an amazing job raising and taking care of your beautiful daughter. I have learned a great deal from your website regarding SMA and all that it entails. I pray that you and Shira will continue to grow together and create new memories that you will cherish forever. May you be blest in all that you do.Thank you kindly for sharing all of this information and opening up your lives to the rest of us! Please tell Shira that I love Michael Jackson as well! I loved her singing that song! Truly adorable!Be well,Lisa :) |
| Name: Janice |
| Date: July 20th, 2009 |
Comments:
Shira,I learned of your website from the jocelynpaigelee.org site (very good friends of mine). I just wanted you to know that you are a beautiful and strong little girl. My thoughts and prayers are with you and your family! |
| Name: NASIR |
| Date: July 26th, 2009 |
Comments:
Hello i'm NASIR from turkey 19 age.i have sipnal muscular atrophy type 2 im Priority want your thanks for videos and this web site. im want To meet your If on you want add my mail address rojuhiw@hotmail.com |
| Name: Henna from Finland |
| Date: August 19th, 2009 |
Comments:
Hugs&kisses from Finland to beautiful babygirl. :)Hope that Shira and her family is doing well. |
| Name: Emily McRobie, RN |
| Date: August 25th, 2009 |
Comments:
Hello Mary, Mom has told me so much about you already I had to check out your website. Thanks I will enjoy getting to know more about you,. Sincerely< Emily McRobie RN |
| Name: Mary & Jenna Boguhn |
| Date: September 15th, 2009 |
Comments:
Hi Shira! We just stopped by to see how you are doing. Hope all is well! Hugs! |
| Name: Geri |
| Date: September 16th, 2009 |
Comments:
Hi FishersA very happy, much-belated birthday, Shira!! Michelle and I have been away camping since late May and just got back and checked your website. Hope to see you cruising around the neighbourhood before the rains come. Hope you're enjoying school and sports, Sammy.Much love to you all,Geri and Michelle |
| Name: Lisa Hurd |
| Date: October 06th, 2009 |
Comments:
Hi I just wanted to say you are an inspiration to us all. I googled sma and diet and was immediately drawn to your video of you making shira's food.We are currently in the process of switching my son's diet to a similar diet. Joshua is type 1 and just turned three. Thanks for the video.Lisa |
| Name: Daisy |
| Date: November 26th, 2009 |
Comments:
Dear Maxine,I found your story through this year's CAMT journal of Music Therapy. Your story of your Shira is beautiful and inspiring! I'd love to hear more about your Music Therapy work! This is wonderful!! Music Therapy is wonderful! Children are miraculous and I'm very thankful to have learned of Shira. Thank you for sharing her beautiful journey with the world! Kudos to you and your husband and your son for supporting each other in this unique journey!! |
| Name: gülhan cengiz |
| Date: November 27th, 2009 |
Comments:
hı I live turkey I have twice baby efe and naz 4 years old they are sma patien shira same ım very sory |
| Name: sumona bakker |
| Date: December 03rd, 2009 |
Comments:
hi, i like shira's video.i never send any parents any email,this is my first time.my son's name is rashad bakker,if you check the name list you can find his picture.he is going to be 10 year's old in february 4th 2010.he is also s.m.a type 1,and a fighter.we also went to doctor bach long time ago .he was a excellent doc and good friend's of rashad.we have to make rashad web site too.lots of good idea i get from shira's web site.thank you.love shira. |
| Name: Kimberly Albertson |
| Date: January 06th, 2010 |
Comments:
God Bless Shira and your family. |
| Name: Claudette Press |
| Date: January 25th, 2010 |
Comments:
Hi ShiraLove your website. You are looking great. Regards all the way from South Africa |
| Name: graciela |
| Date: February 28th, 2010 |
Comments:
HOLA SHIRASOY TO DE LA ARGENTINA Y ESTOY VISITANDO TU BLOG QUE ES HERMOSO, YO APRENDO MUCHO CON LOS BLOG DE USTEDES.EL VIDEO QUE ESTAS CON LOS PATITOS ES BELLISIMO.TE MANDO UN BESO ENORMEGRACIELA |
| Name: Nachman |
| Date: April 01st, 2010 |
Comments:
Thinking and praying for you ever since you gave me your names some years ago. You are in my thoughts and in my heart.moadim besimcha,Nachman Ricky Fahrner |
| Name: Andrea |
| Date: April 04th, 2010 |
Comments:
Brad,Our second daughter was born in September 2008 and was diagnosed with SMA Type 1 at 6 weeks old. We had never heard of SMA and were told to take Marley home and love her until she died. It was like a dream and so unreal. When I asked the pallitive care team to connect us with somebody who had experienced with SMA, they told us that there was noboday. We were not given any information about FSMA or other organizations that offer support or information about SMA. We felt totally alone. Nobody told us about special car seats or equipment that would improve Marley's quality of life. Nothing seemed urgent...just take her home and watch her decline, ther is nothing we can do. At 3 1/2 months I put Marley in her car seat to rest at a family Christmas celebration and an hour later I found her dead. I wish that I knew that there were things that I could do. Everyday I live with the guilt that putting her in that infant carrier shortened her time with us. You have devoted your life to sharing Shira's story and your experiences to help people like me make informed decicisions about how to care for their children under some of the worst circumstances imaginable. Thank you for sharing your inspirational story.Andrea |
| Name: Carol |
| Date: April 05th, 2010 |
Comments:
I have so loved reading Shira's story....our son died 30 years ago from this disease...way before anyone knew anything about it. This story seems to stop in 2008.....is there a reason? I really hated to ask that question. My love to your family |
| Name: Lynn |
| Date: April 11th, 2010 |
Comments:
I unexpectedly came across your webpage this evening. Thank you very much for sharing your daughter, family, and the profound experience you are all living...I am grateful to you for reminding me how to love and cherish each moment with my children, friends, and others...and to step back and realize how good life really is...we are here for such a short time...I admire your courage and faith; you are remarkable....I will keep your family, and especially your beautiful little girl, in my prayers...Lynn(Victoria, BC) |
| Name: monica |
| Date: April 27th, 2010 |
Comments:
good morning, i would like to ge some help how or where to buy a second hand cough assist( over the internet) ,in south america (if possible) or in Canada.Pls. it's very urgent, i know emerson and phillips have models, but i can't afford a new one.Thank you very much. |
| Name: Sarah Feasel |
| Date: April 29th, 2010 |
Comments:
Hello to Shira's parents:)I appreciate the comments you made on the panel discussion for FightSMA and I am really happy that Shira is doing well on the diet you and your physician have chosen for her. I would love to talk with you in greater detail. My current e-mail is listed above.Thank-you-Sarah |
| Name: ALLEN R. ESPELITA |
| Date: May 24th, 2010 |
Comments:
I am so touched for giving Shira a quality of life! I am a Filipino occupational therapist here in Qatar and I am really inspired to see the power of parents as the key therapist for the fullest potential of development we can ever have for our children. I wish parents could see this site for them to understand how influential parent could be as an advocate for their children with special needs. |
| Name: sophie |
| Date: June 13th, 2010 |
Comments:
lfantastic little angel continue fighting! |
| Name: Luke & Kayla |
| Date: June 22nd, 2010 |
Comments:
Hello, it was nice to meet you at the MDC walk. Thought we'd leave a note so that you have our contact info. Kayla & Luke |
| Name: Joey |
| Date: July 06th, 2010 |
Comments:
I read your story years ago and have been praying for Shira ever since. May God continue to bless you all. :-) |
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