Sunday, September 23, 2012


When Marty was in 1st grade Annabelle was in his class.  She wore cute glasses and her hair was braided in pigtails with ribbons at the end. She was often caught whispering and giggling with her neighbor.  I'll never forget the morning she ran in two minutes late with a big smile and her teacher said she couldn't come in the class until she'd checked in the office for a tardy pass.  She looked so crestfallen. The teacher was following school rules, but Annabelle, who was only 6, looked so confused I wanted run after her and put my arm around her and walk with her and tell her I knew all about being late and it really was no big deal.

When Marty was in 4th grade he was excited to go to sleepaway camp with his whole class at Mill Hollow.  That night before camp we got a phone call. Annabelle had had a seizure and was in a coma. They didn't know what caused it.  I woke Marty up to tell him. That day as they headed off to Mill Hollow, Annabelle's classmates went fasting for her.  Most of the kids were 9 years old.  I told Marty it would still be fasting if he fasted for breakfast but ate at lunch.  Most of them fasted through lunch too.

Annabelle was diagnosed with Vanishing White Matter Disease.  It's rare.  It's a hereditary gene defect and there is no cure. There isn't any medicine.  There are only two doctors studying the disease -- one in Amsterdam and one in Israel. She was told she'd probably die within the year.  Her mom was told if she could keep her alive for 5 years, there might be a cure by then.  Annabelle lost her ability to walk and lost her ability to talk clearly.

It's been 5 years and Annabelle is still here.  She has a big beautiful smile and a fun sense of humor. She can text, gets around in her power wheelchair and she can swim.  But there's still no cure.

Her parents set up a foundation to bring patients and families together and to raise money to support the two research institutions working VWM.  Annabelle was excited to raise awareness about the foundation and set a goal to swim 300 meters on her own.  When she was diagnosed with VWM, her parents put a pool in their yard. At first she sank. But over the last 5 years, Annabelle has learned to swim with a coach. She loves the freedom the pool offers her!

Last Saturday we cheered Annabelle on as she swam 6 full laps! to learn more.


Cindy said...

Thanks for sharing. She is an amazing girl!

Anonymous said...

Angela, Thank you so much for supporting Annie. It was an extra special day thanks to each of you! Could you email me some of your photos? They turned out great, and we didn't really take many. Thanks again! Brett