Some of you may recall a season four episode of House called “97 Seconds.” The patient, Stark, had a genetic condition called spinal muscular atrophy (SMA). The season before, House (Hugh Laurie) had an encounter with a little girl in “Merry Little Christmas” (he stole her French fries and had his patented epiphany moment with her arguing about whether her stuffed animal was a bear or a dog). She too suffered from SMA. Coincidence that two Princeton Plainsboro patients have come to our attention with this rare disease? Nope.
House executive producer/writer Garrett Lerner has a son with SMA, and we spoke by phone this morning about SMA, his son Zeke, and what people can do to help find the cure for this terrible (and sometimes fatal) disease.
SMA is a neuromuscular disease affecting the voluntary muscles used for crawling, walking, head and neck control, swallowing, and other activities. According to the Families of SMA website, “it is a relatively common ‘rare disorder’: approximately 1 in 6,000 babies born are affected, and about 1 in 40 people are genetic carriers.”
Lerner had never heard of the little known disease until Zeke was diagnosed at about one year old. “He never stood. Other kids were walking around and he wasn’t. It took around three to four months to get a diagnosis and the doctors were baffled.” Lerner related that it was years before his work on House and he was going through “a real-life diagnostic conundrum of my own. [Zeke] became weaker and weaker and then he finally stopped crawling. He was unable to crawl anymore and they finally figured out what was going on.”
Lerner explained that SMA is broken down into several types. “Type 1 is the most severe and that is characterized by children who are not even able to sit on their own as babies and the prognosis is horrible; they don’t make it out of childhood. Type 2 is what Zeke has. They are able to sit on their own, sometimes crawl on their own at a point, but never gain the ability to stand or walk. Type 3 comes on a bit later. Some of the kids are normal until they’re 5, 10 years old—even into their early teens."
Article comments
1 - Brandy D Shifflett
Thanks so much for spreading the word about SMA! I also have a very special child with SMA and had never heard about it until it affected us. My daughter Emma was 16 months old when we entered the SMA life. She's now going on six and I hope more than anything that there's a cure in her lifetime! I also really feel that more people need to be educated on this condition! Together we will find a cure!
Thanks,
Brandy D Shifflett
Visit Emma
2 - barbara barnett
Thanks for sharing that, Brandy. This clinical trial Garrett was talking about looks promising for so many.
3 - Orange450
Thanks to you for raising awareness, and thanks to Garrett Lerner for sharing his family's struggles and triumphs. It's heartening to hear that a real breakthrough could be so close. From the bottom of my heart I hope that Zeke and all the others affected by SMA will soon see a cure on the horizon. "Speedily, and in our day" as they say.
When I think of the ordeal that Lerner and his wife went through when Zeke was a baby, their road to diagnosis, and the daily challenges that the whole family has to face, I really have the urge to tell House that normal isn't overrated at all.
4 - hiyacinth1
Thankyou for posting the interview. I voted, my sister is severly dissabled with M.S. only yesterday in the press there was talk of a new drug, research like that has to be paid for, i hope the foundation win the money to help research into this terrible disease and help these wonderful children.
5 - Brenda
Thank you for bringing this subject to light. Having a 5 year old, something like this really hits close to home. I can't imagine what the children and their families must endure on a daily basis.
Here's hoping for a cure to this debilitating disease.
6 - Smtinsley
Thank you so much for raising awareness of SMA! I have two beautiful daughters with SMA type 2... our story is very similar to Zeke. We can't wait for a cure.
7 - tricia
I have never used facebook before. I created a user name, but have no clue how to vote. As the mother of an autstic child, I know how helpless you can feel at one moment and how blessed that special child can make you feel the next.
8 - Beth Pence
Thank you for your article letting people know about the devastating disease, sma. My grandson was diagnosed at 7 months old and like most I had never heard of this disease, the #1 genetic killer of children. My grandson has never been able to sit, roll over or crawl so he is in the Stage 1 category. It breaks my heart knowing what could lie in store for him if they don't get the funding to find a cure.
9 - barbara barnett
Tricia go to voteforsma click on "become a fan" and then vote.
Thanks everyone for your kind words about this column. I can think of no better way to use the power of the blogosphere and the media. I just found out this morning that my son-in-law's mother (a chemist) one of the scientists working on this disease.
10 - Delia_Beatrice
Good luck to Zeke and all the other children affected by this disease or any other!
Good luck to all of you who had the strength to share your stories here, i hope with all my heart that cures will be found and miracles will be possible for all these wonderful children!
I myself was blessed with a overall healthy child, but still, his relatively minor health problems made me feel panic and pain and despair none the less. I also helped raise my 17 years-younger sister, who was born with cleft lip and palate and, even if her life is within "normal" outlines, there were and still are difficult times and i do know how it feels when you don't have the power to really help a dear, helpless child who suffers.
So, good luck to you all, may these children's lives be better, longer and healthier!
11 - barbara barnett
Good Luck for the final six hours of the voting: help find the cure. Thanks to all for sharing stories of their own struggles and hopes for a cure!
12 - barbara barnett
Thanks to everyone for taking the time to read about this disease and voting in the Chase Community Giving project. Gwendolyn Strong Foundation was one of the top vote-getting charities and won $100,000 for research, bringing them ever so much closer to a cure. Much thanks are due to House E.P/writer Garrett Lerner and the Twitter King himself Greg Yaitanes.
13 - Debbie J
I am sorry I didn't read this article any sooner and that I missed the deadline to vote. I am glad they won $100,000 for their research.
Here's hoping that the research dollars help with finding a cure in Zeke's - and others like him - lifetime.
Barbara, did you mention how old Zeke is now?
14 - barbara barnett
Zeke is nine, I believe.