I wish to have a pool in my backyard
Owen
9
metabolic disorder
Owen's wish to have a pool
Owen was born with a very rare, and devastating disease called nonketotic hyperglycinemia. Many babies born with this diagnosis do not make it past the first month of life, and Owen turned 9 on September 22nd! Owen’s condition means he cannot break down glycine, which is an amino acid that we both take in and produce in our bodies. The result is seizures, severely delayed development, and metabolic chaos. Owen is non-verbal and completely dependent on us for movement and positioning. He has limited use of his hands, has medications around the clock, and is fed with a g-tube. He does go to school and has one of his nurses accompany him, though this year we are choosing to keep him home due to the increased risk to him from COVID.
In thinking about a wish that would be meaningful to Owen, I read about another little girl getting a swimming pool, and realized that it would be perfect for Owen. He has always done well in the water for pool therapy. So for his wish, we asked for an accessible, heated swimming pool. For children with muscular tightness, weakness, or pain, the water can be a very freeing environment. As a physical therapist myself, I am very comfortable utilizing the water for exercise with him. He can relax in the nice warm water, and we can move his arms and legs in a nice supportive way. It is also really good for his sensory awareness to be exposed to different movements, positions and temperatures. His physical and occupational therapists already came out once to work with him in his pool!
Aside from the therapeutic benefits of this pool, it has really given us a new way to spend time together as a family. To take Owen to a public pool, where the water temperature is variable, the crowds are variable, and his tolerance may be variable, this was never really a viable option for our family. Now we can all get in, take breaks as we need to, and spend time together outside getting some physical activity and having fun together. It has allowed his little sister Aubrey to interact with him in a different environment where they can play together just a little bit easier. As Owen gets bigger, his physical limitations will make it even more challenging to give him variety of positions. The accessibility of the lift to get him in and out of the pool safely will be invaluable.
We only had half a summer with the pool this year, and the lift just got installed here as it started to get cool, but we are so grateful for this gift, and excited for the many years of family fun and wonderful therapy options it will bring to our sweet boy. He has faced a difficult road, and has gone through so many things that just aren’t fair. We are not sure what his future will hold but we have hope in the limited research that is being done. Thank you for such a wonderful and generous gift for my sweet boy, that will improve the quality of his life and let us create fun new memories as a family.
