Cheer Day 28

Day 28

Having a baby is a joyous occasion, but for some littles life starts out with a fight and unfortunately can continue that way to the very end. For 7-year-old Johnathan this is the case. He was born fighting for his life and by age 3 he was diagnosed with Niemann-Pick Disease type C. This disease is often called “Childhood Alzheimer’s” because it will eventually rob a child of everything.

Life is not fair

Johnathan’s mother, Rebecca was nominated by Tiffany. Tiffany wanted to nominate Rebecca because of her strength, optimism and courageous spirit. Rebecca and her family are fighting to find help find a cure for this awful disease. Johnathan is now in a trial at NIH in Maryland. He travels there once a month to have injections of Cyclodextrin into his spine.

To learn more about Johnathan and his story visit www.johnathanspencer.org or to give to Johnathan’s family visit www.gofundme.com/af73gk. Help this family bring awareness to their cause and help make a cure a reality.

There are no good words to say to someone whose child is suffering. In my experience this phrase works well:

this sucks 100%

 

We hope the trial is going well, Rebecca. We offer our prayers and support.

God bless you and your family,

The Cheer Squad

 

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