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JONAHS JUST BEGUN-FOUNDATION TO CURE SANFILIPPO IN's Fundraiser:

A Birthday Wish For Children with MPSIII

JONAHS JUST BEGUN-FOUNDATION TO CURE SANFILIPPO IN's Photo
JONAHS JUST BEGUN-FOUNDATION TO CURE SANFILIPPO IN's Photo

THE STORY:

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.

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 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.           

$2,596

MONEY RAISED
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  • Daria-Maret Geller

    $10

  • Laurie Caine

     

  • Barbara Cleaves Frey

    $250

  • Georgette Timmerman

    $250

  • Laura & Joe

    $50

  • Evelyn Schaffer

    $50

  • Carrie Peterson

    $50

  • Kelly Salling

    $10

  • Heather

     

  • Christine Hurst

    $25

  • Thomas Hoffman

    $250

  • Anonymous

     

  • Jennifer Zankel

    $10

  • Evelyn Schaffer

    $10

  • Michelle McVay

    $5

  • Anonymous

    $50

  • Gay Watmore

    $25

  • Cecelia Barrett

    $20

  • Daria-Maret Geller

    $15

  • Barbara Cleaves Frey

    $5

  • Simon Eventov

    $18

  • R Patrick

    $50

  • Mark Dant

    $50

  • Anonymous

    $48

  • Judy Newberg

    $50

  • Ormeroid Family

    $800

  • Peter & Jan Weishaar

    $250

  • Bobby Nardi

    $100

  • Daria-Maret Geller

    $10

  • Pam Holland

    $10

  • The Abbotts

    $50

  • Daria-Maret Geller

    $10

  • Anonymous

    $25

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52% Raised of $5,000 Goal

The Team: $2,596 TOTAL RAISED SO FAR

Fundraiser Title

Christi Ormeroid

Amount Raised

$800

Fundraiser Title

JONAHS JUST BEGUN-FOUNDATION TO CUR...

Amount Raised

$716

 

14% Raised of $5,000 Goal

Fundraiser Title

Jonny Lee Miller Fans Unite For Jon...

Amount Raised

$625

 

125% Raised of $500 Goal

Fundraiser Title

Zeea Adams

Amount Raised

$250

Fundraiser Title

Daria-Maret Geller

Amount Raised

$130

Fundraiser Title

Mari-Elaina Garcia

Amount Raised

$75

 

20% Raised of $380 Goal

Fundraiser Title

Jennifer Wood-Mercier

Amount Raised

$0

Fundraiser Title

Rodrigo Carlson

Amount Raised

$0

Donor Comments

Anonymous

ANONYMOUS

DONATION: $25

3 months ago

Daria-Maret Geller

Daria-Maret Geller

DONATION: $10

Collection of empty bottles at school 3 months ago

The Abbotts

The Abbotts

DONATION: $50

3 months ago

Pam Holland

Pam Holland

DONATION: $10

You're a much-loved boy, Jonah! Here's to many more years. xx 3 months ago

Daria-Maret Geller

Daria-Maret Geller

DONATION: $10

Happy Birthday Jonah! 3 months ago

Bobby Nardi

Bobby Nardi

DONATION: $100

Children first 3 months ago

Peter & Jan Weishaar

Peter & Jan Weishaar

DONATION: $250

Happy Birthday Jonah! Grandma & Grandpa love you! 3 months ago

Ormeroid Family

Ormeroid Family

DONATION: $800

In honor of our amazing SuperHero Levi! Levi just turned 19 and we are hopeful for many many more birthdays to come!! 3 months ago

Judy Newberg

Judy Newberg

DONATION: $50

3 months ago

Anonymous

ANONYMOUS

DONATION: $48

3 months ago