I would like you to spend 2 minutes reading my nephew Jake's story below, written by his mother, Debbie. He is a truly inspirational little lad who has had to deal with a whole host of challenges so far in life and he now faces his biggest one yet. In the photo above, you see a happy Jake with my girls in Christmas 2012. It is deeply saddening to see what has happened since then.(read below)
As his Auntie and Uncle, Joe and I have decided we want to do everything possible for Jake and try to help fund the treatment he so greatly needs. 2000 Euros is just a target, it is a long way off the amount needed for his treatment. Therefore, we have decided to hold various fund raisers. We are holding a toy and book sale at Little Acorns Pre-School, a coffee morning on 26th March, a curry evening, and on Sunday 11th May, we will be cycling the Blackwater Valley Path, covering 3 counties - a total of 30km. This will be a challenging ride however it is nothing compared to what Jake has had to face throughout his life. I hope you can help make a difference by sponsoring Joe and I, attending the events and playing a part in getting the treatment Jake deserves. Caroline and Joe Reina :-)
JAKES STORY SO FAR::::. Jake is a 9 year old boy and suffers from complex partial epilepsy in the Frontal Lobe (right hand side of the brain). This type of epilepsy is very drug resistant and hard to treat. Diagnosed when he was 2, we had a few short stays in hospital for medication adjustments but nothing major for the first 5 years. Then 2 years ago, just before his 7th birthday everything changed, he started to have lots of seizures which built up to 150-200 a day.
He has spent nearly a whole year in hospital, between the Costa del Sol and the specialised children's hospital in Madrid. A Focal Cortical Dysplasia (malformation of cortical development) was discovered, which is a congenital abnormality where the neurons develop larger than normal. This causes the signals sent through the neurons in this area to misfire and send an incorrect signal which causes a seizure.
At this stage Jakes seizures were so bad, and uncontrollable he went into "status epilepticus" (continuous state of seizure), he was put into an induced coma on 3 occasions to enable his brain to rest.
Over a period of 18 months, the last one in April, he had 4 major 7 hour operations to remove the affected area. TheDysplasia is in the motor part of the brain and it caused him to lose the use of his left arm and hand, considerable damage to the nervous system and facial paralysis.
Jake went through rigorous daily physiotherapy for 3 months and learned to walk again 4 times.
Despite this the seizures continued. Currently he is havingdifferent types of seizures, a PARTIAL with uncontrollable facial movements where blood vessels burst in his eyes An ABSENCEwhere he totally disconnects, doesn't respond and sometimes hesits and rocks backwards and forwards. Also he willspontaneously laugh, have outbursts of anger and aggression, or he go into a state of confusion "“ he will walk away and doesn't know where he is or how he got there. It's heartbreaking to see.
A recent stay in the hospital in Madrid revealed there is still a part of the Dysplasia left, and a further focal area has been discovered,showing abnormal activity at the back of the brain. This type of epilepsy is progressive and the damage done over time through the seizures and medication overload is irreparable. His condition will worsen with the onset of puberty:leading to severe memory and language deficiency (Rasmussen Syndrome). This has started to happen as he has already lost his peripheral vision.
Jake is the only child in Spain to have 4 operations of this type. The neurosurgeons in Madrid are some of the best in Europe but they cannot operate further as they do not have the technology or the surgical experience. They strongly recommend that we take him to a specialised children's hospital the ¨Rainbow Clinic¨ in Cleveland, Ohio. They have years of experience and some of the best neurologist and neurosurgeons in the world. They also havea 7 Teslas MRI magnetic scanner (Spain only has a 3T), which can detect all the abnormalities of the brain. He will need extensive tests, and will hopefully qualify for surgery to remove a larger area that's causing all these problems.
Jake is a funny, loving and caring son, brother, grandson, nephew,cousin and friend. He deserves a better quality of life and theopportunity to a future. He has already missed 2 years of schooling and the chance to build relationships with his peers. I can not sit back and see this happening to my son when I know something can be done. I want to give him the best chance in life,he is just a child who deserves so much more.
We are raising money to take him to the Rainbow Clinic, please help no matter how small. Every little helps because together WE can make a difference and CHANGE JAKES LIFE!!
THANK YOU Debbie Rose
You can follow jakes story on www.gofundme.com/5ez8nc
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