July 30th marks Jonah's 9th birthday. A day his parents were not sure would ever come.
For a child with Sanfilippo, reaching a birthday is a gift in itself. The milestones that most parents look forward to someday, Highschool Graduation, College, Grandkids, are not what these parents daydream about. They are overjoyed just to be able to celebrate another year. Please take a minute and read the story below in the words of Jonah's Mother. Any donation over $5 will recieve a Macy's Saving Pass.
Jonah is turning 9 at the end of July! We put together a little slide show of Jonah’s previous 8 Birthday’s. I hope you can appreciate the miracle that he is and how far JJB has come, with your help.
This Year, Jonah wants a Pokémon themed Birthday party. We’re so into that.
Jonah was just 2 months shy of his second Birthday when he was diagnosed with MPSIII C, an incurable terminal genetic syndrome. The diagnosis came pre-symptomatic- Jeremy and I had no reason to suspect that anything was amiss with Jonah’s health.
We celebrated Jonah’s first Birthday in Ignorant bliss. We picnicked under our favorite tree in Prospect Park, Brooklyn; it was a perfect day under the trees shade with friends and family.
After diagnosis, for Jonah’s second Birthday we left it up to Grandma and Grandpa to throw a party. Jeremy and I were too shattered to plan anything. We had just been told that our two year old probably wouldn’t live into the 2nd decade of his life. Jonah, made the best of his Birthday frolicking with his cousins. I can’t recall if there was a cake at his second Birthday party. I couldn’t find a picture of us blowing out candles.
Jonah’s 3rd Birthday is less of a blur, we went to Grandma and Grandpa’s again. This time, we invited another MPSIII family that lived in the area. I remember everyone singing “Happy birthday”.
By Jonah’s 4th Birthday I had emerged from my grieving period. The research for a treatment was moving full speed ahead and so was Jonah! At diagnosis Jonah had a few words, the typical first words: Mom, Dad, ball, car and so forth. Jeremy and I were warned that this was probably the best we could expect. Jeremy and I readjusted all of our expectations and just lived for Jonah. But at 4… Jonah was speaking full sentences! His progress, defied everything we had heard or learned about MPSIII. This gave us even more hope… Maybe Jonah could live to see a treatment and even BENEFIT from that treatment. Jeremy and I found hope and started to live life again with Jonah.
Jonah’s 5th Birthday was a rock star party celebrated at the Robot Foundry. Jonah was going to start public school soon! He was not happy about leaving his “little school’ and going to the “big kid school” but he finally conceded and accepted the fact that all kids must go to Elementary school, for better or worse. Jonah made a ton of friends and everyone loved him. He’s the sweetest, most considerate and aware child you’d have ever met.
Jonah’s 6th, 7th and 8th Birthdays have all come and gone with no adverse events. Jonah is cognitively still the same as he was at 5 years old. Jonah’s report card grades are pretty much all F’s but they don’t grade on subjects like: kindness to others.
At 8 going on 9, Jonah is a happy, healthy, Rock Star! And by healthy I mean that he is not visibly sick. He’s 9 but he still has the mentality of the coolest sweetest 5 year-old. So we can all breathe a little lighter today. Put a smile on your face, if you don’t already have one. Jonah is fighting his fate, without even knowing it. He has given us a head start to save him.
For Jonah’s 9th Birthday please donate here and shop Macy’s for back to school. With you’re help we will see the next generation of MPSIII children through graduation.