Wednesday, 7 January 2009
Welcome To My Web Site - Shira Fisher (SMA Type 1)Spinal Muscular Atrophy Canada

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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
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