Meet Reed! He is truly the definition of a superstar, always being an amazing big brother to his little sister Ruby. He recently accomplished an amazing milestone - having the strength to reach and turn a doorknob! For having weaknesses in the wrists, the turning motion can be challenging for Reed so his family is VERY proud of him! To learn more about the weekly infusions Reed takes and his love for the Beatles, read the interview conducted with his mother below.
1. To start off, can you tell me a little bit about Reed?
Reed is 4 years old, and he was diagnosed with Morquio A syndrome last year shortly after his sister Ruby was born in the middle of the pandemic. Reed has always been petite and after many specialist appointments and dead ends, his endocrinologist requested a skeletal survey, which are x rays of every bone in his body. These were all abnormal and we were immediately referred to the geneticist. We were expecting that something would be off, but not to the degree at which Morquio does and will continue to affect him. Reed lacks the enzyme he needs to break down certain sugar molecules in his body called glycosaminosglycosans. These molecules then ultimately attack all of his organ systems, mostly affecting his skeletal system. He receives a weekly infusion of Vimizim, a synthetic version of this enzyme. Unfortunately, this only prevents him from getting worse, and there is no cure.
Even through all the challenges, Reed always has a bright smile on his face! He is very much a rule follower, and learns and picks up things so quickly. Most of all, he loves trains, cars, and all types of music, especially the Beatles. He is also an amazing big brother and always takes care of his little sister Ruby.
2. What do you love most about raising Reed?
Being his mother, I thought that I would give Reed life, but he truly gave me mine. His zest for life and personality are unmatched. I learn so much from him every day.
3. What are some of your favorite resources as a parent?
Other moms of Morquio children I have met on Instagram have truly been an amazing resource. Whether I need advice or have any questions, they have always been an amazing support system. The MPS society and NORD (National Organization for Rare Diseases) have amazing resources as well for people like my son.
4. What is a recent accomplishment/milestone of Reed?
Having the strength to reach for and turn the door knob! With Morquio, there can be weaknesses in the joints. For Reed, he has weakness in his wrists, so that turning motion can be challenging. Reed has been working so hard on improving his wrist movement and we are so proud of him!
Reed is also very smart. He has the amazing ability to open a book he has never seen before and read the words on the page!
5. What has your son taught you?
Reed has taught me so much about life, but mostly how important the simple things are. Every thing he does is like he is experiencing it for the first time. Watching Reed explore the world through his own unique way is truly my greatest joy.
6. What message/advice would you like to give other families who have a child/children with special needs?
When your child is first diagnosed, it can often be a very confusing and isolating experience. My best advice is to build your support network and align yourselves with people and families who have similar experiences to you. The times I needed support the most were a long time after the diagnosis. Certain milestones and the anniversary of the diagnosis can be much harder.