Owen has had an extremely hard couple of years. He will be 5 years old in October. This last year Owen was diagnosed with a rare genetic disorder known as BRRS. He was also diagnosed with Sensory Integration Disorder, and is also on the Autism Spectrum. BRRS is a genetic disorder that has many unknowns. Many people with this syndrome have weak muscle tone, muscle abnormalities, thyroid problems, and some will eventually end up with tumors (most of which will be non-cancerours). BRRS is scary because we have no idea what lies ahead for Owen and his health.
We have created this Gofundme site to help us as we provide a therapy pool for Owen in our own backyard. We were paying for him to receive private swim lessons, but it was only one time per week. The sense of peace he gets from swimming is one reason for purchasing the therapy pool, but providing an opportunity for a low impact workout that will help with his low muscle tone and weakness due to the BRRS is our main reason for us reaching out and asking for help. If there are funds that go above the cost of the therapy pool, then we plan on building a Sensory Integration Room for Owen.
As we have watched Owen develop and grow the last couple of years, we have been paying close attention to the things we feel make him at ease and help him with his low muscle tone. He has almost finished 20 sessions of Sensory Integration Therapy, and he loves it. It has helped a great deal with building some of his strength in his core and lower body, and has really helped him with communication and given him an understanding of back and forth conversation with others. However, as many parents who have children with medical issues know first hand...eventually the coverage ends for the year. We would like to be able to provide Owen with his own Sensory Integration Room. If he had access to this type of therapy on a daily basis, we feel like we would see growth in all areas at a much quicker pace and we would be able to provide him with that type of care daily rather than 2 times a month.
We also began to see how water (whether it was in the bath, standing in the middle of the ocean, or swimming in his lessons), gave Owen a sense of peace. It calms him and helps him focus in on the things that are most important. Water is an area that allows him to work on his low muscle tone and muscle weakness, without really feeling like he is working hard or "exercising".
With all of the medical appointments and diagnoses this last year, we have also been battling a 30 pound weight gain in less than a year. The doctor's have no idea why the sudden weight gain, but we have to find a way for him to exercise that is reasonable for a young child. We are worried that the weight gain will lead to more health issues down the road, and swimming is a great way to help him in all areas.
My husband and I are both in the field of education. I am a first grade teacher of almost 14 years, and my husband is a high school counselor and baseball coach of nearly 10 years. We are blessed to not only have Owen in our life, but we also have a 2 & 1/2 year old daughter as well. We work hard for the things we have, but absolutely do not have any other means to earn extra money or pay for these items out of pocket.
We realize there are thousands of families who are far worse off than our family is. This weighs heavy on our hearts each and every day, and we know setting our pride aside is our only option. We feel like the therapy pool and a Sensory Integration Room is something Owen has to have at an early age, so that he can get the most intensive therapy possible. We know that with time and a great deal of effort, we will see positive results.
We greatly appreciate you taking the time to read our story and hope you feel as passionate about helping Owen as we do. We love him and our daughter more than we can imagine, and providing this opportunity for him is something we know we have to make happen.
Thank you again and may god bless each of you!!! Please be sure to share our story with any family and friends that you feel would be interested in helping Owen.
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