First of all we want to thank each and every one of you for your interest in our son Lucas and his story. After four long stressful years to find a diagnosis and we were told it was, HSP3A-complex. This condition is progressive and there is no cure. In addition, Lucas has Axonal motor neuropathy which means the signal between his nerves and muscles is broken and causes the muscles in his hands and feet to waste (Muscular Dystrophy). We hope to find out more about this and how it will effect him. The protection part of the brain has also been effected. Lucas has trouble with his legs, hands, breathing, digestion, urinary and swallowing. We do not know the progression rate of his condition as there are only 1000 people in the US that have the HSP complex.
After finding this diagnosis, I (Lucas' Mom) found a specialist that sees children all over the US for HSP and has a clinic and annual conference. We have found trust in this doctor who explained that Botox treatments while good for most, will not really help Lucas. Lucas can not support his own body even in a walking device. Water theraphy has been expressed to be the best option for Lucas. There is not much pressure on him in the water and everything can move freely.
We have decided to open this site to have our immediate need of raising funds for the annual Texas Trip met. We have been told that alot of the doctors want to put him under as little as possible and are willing to team up with the doctors in Texas to get everything handled at once. This will require an extended stay in Texas where the whole family will participate. (We usually leave his brother and sister behind).
We would also like to get Lucas involved in water therapy to help relax the muscles he has and relieve any pain. If we ever exceed our goals we would love to show our son what fun the world can bring. As we move towards the future, we do not know what will happen. We just hope to give Lucas the best life possible and have some fun along the way. We also update on immediate goals as we have trips to doctors which are about 2 hrs away and even Texas.
Thank you, we love all of you and your thoughts and prayers. We appreciate your love, support and encouragement during this process.
Any donations go right to Lucas' parents bank account.
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