Seeking a Cure for Jonah
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Jonah Weishaar looks like a normal, healthy two year old as he giggles while running around a playground near his Brooklyn home. But his parents, Jill Wood and Jeremy Weishaar, know their son is in a race against time.
Last May, Jonah was diagnosed with Sanfilippo syndrome type C, an incurable and extremely rare disease that affects one in 1.4 million children in the U.S. Jonah may have only two more years of relative health, doctors say, before he starts to show symptoms: mental retardation, bone deformation, organ and tissue damage. Children with the disease face death before adulthood.
Wood is determined to use every moment to help find a cure. She needs to find enough children like Jonah, believed to be the only youth in New York City with the condition, to justify a study by Dr. María Escolar, a North Carolina genetic disease specialist. To raise awareness and reach out to other families, Jonah’s parents created the Jonah’s Just Begun Foundation To Cure Sanfilippo Inc.
Five families with children with the condition have agreed to the study and Wood has heard of three more overseas. Once 10 families agree to participate, Escolar will conduct her study and present her findings to drug companies to help develop a cure.
Wood, an apparel designer, stays at home caring for Jonah and running the foundation. Her husband, an NBC cameraman, supports the family through his job, which includes crucial health insurance benefits.
“I’m going to find a cure in Jonah’s life and give life to my son once again,” Wood vowed.
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Great article! Would love to read/watch more about her quest, she is an amazing mother, they are in our thoughts and prayers!
An amazing story…. I wish you all the luck and energy you need! I have hope a cure will be found…. and that you will find the needed children to perform the study!
I prey for you to cure.
What an amazing mother and a beautiful little boy. We owe it to them to help find a cure. The first step to finding a cure is awareness of the disease. Other children that are currently undiagnosed can be found if someone such as a doctor, nurse, therapist or caregiver recognizes the symptoms. This story was fantastic and made my heart ache, but in a way that makes me want to stand up and help them fight.
I have been so touched by Jonah’s story and his mothers race to find a cure. His laughter and play is so typical of a two year old and we should do all we can as human beings to see that laughter and play remain in this child’s life forever. We need to publicize this disease and do what we can to give life to this precious boy and his loving family.
What a sweet little boy, I will share the foundations website with my friends and family. All the best.
Thank you for bringing awareness to this brave family and sweet Jonah’s disease. Jeremy and Jill will find a cure for Jonah…and help countless others along the way.
Have faith Jonah, and keep playing!
Jill, Jeremy, Jonah,
LOVE,
Len
All the best of luck to this family and others affected by Sanfilippo syndrome type C. Please spread the word!
Very touching video. Hoping and praying for a cure for Jonah!
I have known Jill since she was Jonah’s age, and I have a granddaughter his age. Thank you for your story, which is heartbreaking and heartwarming at the same time. Jill’s strength and determination will help win this battle. We can all help with their journey.
Beautiful documentary done by Jose to raise awareness of this dreadful disease. Jonah deserves a cure for Sanfilippo Syndrome Type C and his parents are insuring that this will occur. It will help him and many others in the future!
Jill Jeremy and Jonah you are a inspiration and I hope so much that the cure is found within the crucial time that Jonah has before damage is done! He is such a sweet boy!
I am touched and inspired by Jill and Jeremy’s courage and determination to find a cure for their son. They challenge all of us to give every day our best and never give up! Jonah and other children like him are depending on us and deserve our best efforts!
Jeremy, Jill and Jonah,
You are in my thoughts and prayers.
With love,
Alex
Very moving video, our thoughts and prayers are with you.
Jonah, Jill and Jeremy,
May your determination, courage and strength win the battle! I know that you will find a cure. I am sharing the foundation’s website with everyone I know.
Love,
Olga
Amazing story, and an inspiration to us all. Good luck with getting the research going!!! I hope a cure can be found quickly so Jonah can have a long and happy life!!!!!
Jill and Jeremy,
Keep it up – we are hoping for you!
This incredible family is in our thoughts and prayers. Keep smiling and playing every day, Jonah. A cure will be found!
The power of a parent’s love is very evident in this video. Hope the word keeps spreading-Jonah and all the other children and families struck by this deserve the chance to live a long and full life.
An Amazing Family! Keep on raising awareness! A cure will be found and Jonah will continue to laugh and play. He is a great little boy. Visit Jonah’s Foundation for ways to help raise awareness, every bit counts.
Your love and determination will over come this! Sending our love and prayers from Oregon!
This will happen, that is all you can think.
Very nice video. Thank you for sharing!
May a cure be right around the corner for this beautiful little boy!
WOW! What a story. I would love to meet Jonah. I pray that a cure is found and thank you for creating awareness.
This is the strongest family I know. Such an inspiration. There will be a cure in Jonah’s life time. Keep up the amazing work!
what a touching story. we are sending our thoughts and energy your way in hopes that you will find success with this.
peace to your family.
My thoughts and prayers are with the family to find a cure for that beautiful little boy.
What an amazing story – amazing little boy, amazing parents. Praying for a cure and crossing my fingers that the study gets funding!!
Go, Jonah, go!! You’ll get there, just keep on plugging away…
It is very inspiring to see the awareness about Sanfilippo that Jill has created and how they have urged so many people to action in such a short period of time. We talk about the situation with family and friends quite often and hope that a cure is found. We are all thinking of you and your family.
Great article! What an amazing family!! Would love to hear more and see more awareness about Sanfilippo.
Jill and Jeremy,
You are doing all the right things–I am sending you both all my strength to keep you going in this struggle to learn and teach and develop a cure for Jonah and all the others with Sanfilippo C and the other types of Sanfilippo.–Press like this is so good for the cause.
sending love and prayers to this strong, incredible family. there will be a cure!
Jill and Jeremy, you are both amazing parents. This is a very touching article and video. You are doing a great job raising awareness. You will find a cure!
This is such a strong and inspiring family. Wishing them all the best with finding additional families for the study. A cure will be found!
My thoughts and prayers are with you and with all the families dealing with this syndrome. I am praying for a treatment!
hola mucha fuerza para todos .yo os entiendo mi hijo también tiene la misma enfermedad ,solo que con 14 años .os deseo mucha amor y mucha paciencia
I hope with all my heart you succeed in savings Jonah. I cherish every momment with my own children who are now in their twenties. I pray you get the chance to see Jonah as a healthy happy adult.
What an amazing story! Best of luck and I hope a cure is found very soon!!!!
Let’s not forget that Jonah is busy learning,growing and playing, while his parents continue to work every day to find a cure for their sweet boy.
What an amazing family!
I Truly Believe in Miracles. I pray for one for my little beautiful nephew Jonah.