Tonya Bartholomew Phillipsburg, NJ 3,861 Votes
Im a mother to a wonderful 7 yr old boy who has lennox gusto syndrome and Williams syndrome.
LGS is a rare and deadly form of epilepsy,Daily multiple seizures are typical in LGS. Also typical is the broad range of seizures that can occur, larger than that of any other epileptic syndrome. The most frequently occurring seizure type is tonic seizures, which are often nocturnal (90%); the second most frequent are myoclonic seizures, which often occur when the person is over-tired Atonic, atypical absence, tonic, complex partial, focalized and tonic–clonic seizures are also common. Additionally, about half of patients will have status epilepticus, usually the nonconvulsive type, which is characterized by dizziness, apathy, and unresponsiveness. The seizures can cause sudden falling (or spasms in tonic, atonic and myoclonic episodes) and/or loss of balance, which is why patients often wear a helmet to prevent head injury.
In addition to daily multiple seizures of various types, children with LGS frequently have arrested/slowed psycho-motor development and behavior disorders. Johnny doesn’t walk or talk and is very limited in the things he can do, he has mutable seizure every day as many as 20 on a good day. Taking little johnny any were is hard his wheelchair doesn’t fit in our small car and he is to big for a stroller and he is only god willing going to get bigger! I am only able to work part time and have very little income. Johnny has to go to Philly a lot to see his doctors and that in its self is a challenge. Philly is about 2 hours from our home and most of the ride he is uncomfortable. I desperately NEED a wheelchair van for him I just cant afford to buy one. Johnny is such a joy and he brings happiness to everyone that meets him, he is so happy and loving and has changed my life and other for the better. Please help little johnny get the van he needs. He is a hero to many people they see the struggles him and our family go through and it gives them hope and courage to stand up for the disabled, to move forward when life seems hard, because if this little boy can smile and look froward when every day is a fight so should they.