"I believe a cure is possible and we will eliminate the challenges of MPS. Join us to make this a reality for Julia Ann Donahue and all children living with MPS"

Julia Ann Donahue

To our little Julia, May you never stop fighting and reaching for the stars! You my child are the bravest and strongest little girl I ever met. I know you are capable of greats things. We love you so very much!

My goal is to raise $1,000
Total: $740

Julia's Story

We are truly blessed to all who came out and joined us for Jammin for Julia!!!
It was a great turn out!!! We are so very happy to announce we will continue to have Jammin’ for Julia that will take place sometime in May!! I know this event will be as great if not better as last years.

OUR STORY:
Christmas of 2017 our little June bug was diagnosed with MPS IVA Morquio Syndrome-something we had never heard of. The doctors told us not to go home and Google it cause it would probably upset and worry us. So what did we do?!? We went home and looked it up, and at first I was heart-broken thinking of the life she would have and how terrible and unfair this was. But let me tell you: our little Julia is the spunkiest, most fun-loving child you will ever meet, and I now know this is something our family will get through together in the best possible way. We will not let this bring us down but lift us up as a family, and do all we can do to help. She recently started Vimizim, which is a treatment for Morquio. It’s a weekly infusion she receives every Tuesday and will continue to take for the rest of her life. This treatment will not cure the syndrome, but it will help to slow the progression. She has already had a few surgeries to put a port in her chest and also had an umbilical hernia removed and a double hip surgery . She sure is a trooper and handles it all very well.

For those of you unsure of what Morquio syndrome is my brief but hopefully helpful description is this…
Morquio A is a rare and progressive inherited disease. It effects everyone diffrently, impacting organs, bones, and other parts of the body as well. People with MPS IV A do not make enough specific enzymes in their cells; without it, they build up waste inside the cells, causing several major health complications. Hope that helped a little bit. Thank you for taking the time to listen to our story. I hope you can help us in finding a cure and spreading awareness of MPS.

Please help our family and support the National MPS Society. Every little donation can make a huge difference in the lives of those affected by MPS.

Messages in Julia's Guestbook

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  • ice guy

    This article reads great!
  • Elizabeth Guerino

    More than happy to help an amazing family with a an amazing little girl. XOXO
  • Dani

    Gymnema can help reduce sugar cravings due to its unique features. By using AdvoCare products, you can see the difference it makes in your sports life. Proteins and other brain signaling chemicals are manufactured using l-tryptophan. Cycling is like a fertilizer for your brain. To continue the feeling, they learn they need the particular drug to satisfy their craving, just like how someone might crave ice cream when they watch a movie or a hotdog when at a baseball game. Deficiencies in key neurotransmitters like serotonin can lead to sugar cravings. Taking l-tryptophan supplements can ensure that you don’t suffer serotonin deficiencies. Fats can get trapped inside the liver due to deficiency in choline. It's a gentle introduction to a more intensive detox once you get into the swing of it. The math is simple: Burn more calories than you take in and you'll lose weight loss in 15 days. Both also contribute to metabolic rate-the more you have the more calories you burn daily.
  • Karen Miller

    I believe in Julia!

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