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18

Aug, 2017

Fundraiser Helping Pablo and Alvaro

Please support Coach Javier Pena and his family by donating. https://www.gofundme.com/pabloyalvaro

Pablo and Alvaro's Family Story

We are a family we arrived to USA from Spain. Pablo and Alvaro were born at 33 weeks, Pablo with 3 lb and Alvaro with 5 lb. Both were a month in hospital incubator without any problems and pending they could eat right and gain weight.

Its growth and development was completely regular, nothing to expect what they would happen years later. They crawled at 6 months, talked at 13 months, they were healthy and happy children. At 15 months they had their first febrile seizure, doctors did not give a lot of importance and they told us they were because of the immaturity of the brain and these would disappear at 4 years-old. After 9 febrile seizures and two-year, seizures were controlled.

A day of party, after they were down of bouncy castle, Pablo and Alvaro were not able to walk. Immediately we call their neurologist and he gave us an appointment for next day. His diagnosis was myoclonic epilepsy and he told it would be very easy to control with any medication, but nothing is further from reality...

We started with Depakote and Keppra, but these did not control seizures and away to continue their normal development, they began to delay in everything they had learned previously. From there we started with trial and error on all types of anticonvulsants, they were testing up to 9 of them and nothing worked good for them.

In our fight against this intractable epilepsy, we visited several neurologists who never knew determine the name of epilepsy. Clearly it was a catastrophic epilepsy and that it caused the decline child development. In his last EEG determined that the children had a large number of occult seizures. Pablo had 40 seizures/ 2 hours and 50 Alvaro seizures / 2hours. We moved to USA, we try to find some solution for them.

When we get to control the seizures, another the fatal news, they don't have an epilepsy if not this was a symptom of a great disease. They have Batten disease, Batten disease is a rare genetically inherited disorder which belongs to a group of progressive degenerative neurometabolic disorders, known as the neuronal ceroid lipofuscinoses (NCLs), in the variant CLN6, it is a mortal disease. They will have a short life. They now are 8 years old and we continue to fighting to get a better life for them and until the end day we will try it. They aren't able to walk, speak, eat themselves, are blind.... We want to try access to some trial.

The medical expenses and special needs are higher, plus we need a special home for them , we have needed a lot of money to keep the hope, plus therapies, hospitals, MRIs, doctors, accesible van..... We need your help to keep the hope in the future.

Only we have to say, hopeful to get this and improve their life, and grateful all the help we get for them.

Website Manager

Riverside Youth Soccer Club

News Detail

18

Aug, 2017

Fundraiser Helping Pablo and Alvaro

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Riverside Youth Soccer Club