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!
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.
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.
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