This guy and that beautiful smile.
We are super excited for you to learn more about this amazing kid that we are supporting for this year's golf scramble. WARNING: You may need a tissue or two after reading this.
Can't wait to see you there!
Leo's story told by his mom Jen......
Looking at the huge grin that he proffers to any passersby, you wouldn't know the pain and loss that Leo has experienced. In his birth country of Liberia in 2013, he was found abandoned on the road and placed with the Liberia National Police and Child Protective Services. Little is known about why he was left, but we can assume the primary factor was his physical disability. He was believed to be about a year old at the time. He became a ward of the state and remained so until his adoption in 2021.
Since arriving in America, he has become a regular to hospital visits. His initial diagnosis suggested Cerebral Palsy with developmental delay. He has hyper tone in his muscles, especially in his legs. In the mornings when his medication has worn off, his legs seem as if they are superglued to his chest. He take a muscle relaxant 3 times a day to help control this, but unfortunately it causes side effects-- extreme lethargy, muscle weakness, etc.
He was recently put under anesthesia to get an MRI of the brain. The results were surprising, as there was no apparent injury to the brain, thus negating his original diagnosis. Our next step is to get another MRI but of the spine. The doctors believe he may have experienced a spinal injury which could range from a viral or bacterial illness to complications at birth. There was indication of bone softening in his neck. There are still many unknowns and he has a long road ahead.
X-rays of his pelvis showed that both of his hips are dislocated due to his high spasticity. He will likely need surgery to correct this. He wakes up most nights in pain. The surgeons will not operate until his tone is better controlled or else they could come out of place again. The spasticity specialist is hoping to recommend him for a Baclofen pump. This will be a surgical procedure that will attach the pump to his torso with a tube that wraps around to his spine that can consistently send medication to his legs to keep them loose. In the meantime, we give him the medication orally and he has an appointment to receive Botox injections in his legs.
We also have an appointment soon to look into adaptive equipment. Because of Leo's condition (whatever it may be!) he is unable to sit unassisted. He has been fitted for a custom wheelchair that can offer him more trunk support and it is expected to take several months to get. He will need other things such as leg braces to keep his feet from turning in, a shower chair, a special car seat, and other things that I'm sure we haven't thought of.
Despite his complex medical needs, Leo is one of the greatest humans on this side of Heaven. His smile will calm the weariest of spirits and his snarky and silly attitude will give you all the warm fuzzies. I still can't believe we get to call him ours!