Update
July 31st, 2008
We have been home for almost two months now and Justin has been improving slowly but surely. He has gained a little strength overall. Lately he’s been able to push down on the buttons of his toys which he could not do before and he sits straighter in his high chair. What has grown the most so far is his appetite…boy can he eat….lol !
We are pleased with his improvements but are hoping to see more.
Entry Filed under: sma,Uncategorized
7 Comments Add your own
1. Emma | August 4th, 2008 at 1:05 am
Hello! My name is Emma and I am 16 years old. I live in Sweden and i have also SMA, but type 2. Me, my family and my friends are very interested of this stem cells theory. If you want, you can email me on this adress (emma@emmixen.se). We would be very happy if you did! I hope it helped Justin a lot. Hope to hear from you! //Emma
2. gisele schabach | August 4th, 2008 at 10:39 am
justin, you have rapid improvements.
I have a child with type 1 and sma His case is very similar to the justin, but my son has tracheostomy and gastrostomy, since 24/09/2007. I want to go to china to do a treatment, please return me. help me. help me
Gisele
3. Ritesh Sehgal | August 5th, 2008 at 5:01 pm
Dear Sir/Mam
It is infacvt a gr8 news that Your little son Justin has seen improvement.
I am from India (New Delhi) and my little angle my daughter 6 months old have been diagnosed with Spinal Muscular atrophy type 1.
Please let us know whether the treatment was a suscess and the improvement that Justin has showed. It would be a gr8 help for us.
We really pray and hope that Justin could be the first SMA patient to be fully cured from the desease.
With lot of hope and wishes
Ritesh Sehgal(Father)
+91-9818099200
4. Julie Clegg | September 16th, 2008 at 2:16 am
That is such amazing news about your son!. I actually became aware of Justin while researching SMA and Stem Cell treatment. Our Son (15 months) was diagnosed in April 08 and we really would love to find out more about your medical experiences. We are seriously considering the same treatment and need to become more educated on the topic. I think I read/heard somewhere that you are from Canada too.
Would love to get in contact if possible.
Julie
5. Robin Heffner | September 24th, 2008 at 3:58 pm
Hello From North Carolina!
I have been reading Justin’s blog and keeping up with his progress. I have SMA and will be traveling to China for treatments in October. I do hope you continue to see improvement and I will certainly pray for Justin and family.
If you have time to e-mail I would love to hear anything you can share that may help this trip go smoothly. I am somewhat concerned about finding food there I will eat. I am a light picky eater and I am not much for trying new foods.
By the way I think I will be the first adult with SMA to receive the treatments. I am a young at heart 51 years old. My weakness showed up when I was 18 months old. I have participated in all types of research studies over the years. And from time to time I am involved with the Muscular Dystrophy Association. I even traveled to Las Vegas one year for the Telethon. I recently joined Families With SMA.
The trip to China is by far the longest trip I have tried to accomplish. I know it is going to be hard but my weakness is now to the point I have got to try something like this to keep going.
Thank you for sharing your son with all of us who read the blogs. He is adorable! I have a granddaughter that is 17 months old and she just lights up my life. I hope to gain strength so I can be around to watch her grow up. I am telling you way too much about me. I mainly wanted to let you know how much I have enjoyed reading about your son and seeing his cute pictures.
ROBIN HEFFNER
6. Michael | December 1st, 2008 at 9:41 pm
Hi I saw your video on youtube and looked at you blog etc. My son also has SMA. How real and effective is this treatment?
7. Egill Helgason | December 2nd, 2008 at 9:20 pm
Hi
Good to hear your Justin has made some improvements. I myself have a 14 year old daughter with SMA type III. How has Justin´s improvments been since July ?
Best regards,
Egill Helgason
Iceland
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