Billy is aged 11 from Castlederg in County Tyrone and suffers with intractable epilepsy. Billy doesn’t have time to wait!
Charlotte Caldwell had to rush her 11-year-old son, Billy, to hospital last week after he suffered three seizures in one day.
She is being forced to take her youngest son to America for treatment, at a cost of up to £300,000. Billy suffers with intractable epilepsy, a seizure disorder in which a patient’s seizures fail to come under control with treatment.
Following that treatment in Chicago and years of rehabilitation in Oxford, Billy was practically seizure free for the past eight or so years. However, the seizures returned a couple of months ago, meaning the fight continues to get Billy the medical help he needs once again in America.
Charlotte said, “It is hard to believe that Billy is now 11. We were told he would barely turn one never mind be alive a decade later. The fact he is still here and come so far is even more reason to try and get him the best treatment possible.”
“Billy’s medical bills are mounting here in Los Angeles and we desperately need help so Billy can have the treatment to keep him alive. We are in desperate need of help.”
Billy’s story began with him taking his first seizure at 4 moths old, up onto that point Billy was a normal wee baby. He was rushed to RVHB where him and I spent 14 was. Billy was having up to 100 seizures per day. The clinician there eventually told me there was no hope for him. They tried to get me to allow them to connect a morphine driver through a line into Billy’s arm and to have Billy lay in my knee and eventually he would just go to sleep and not wake up again. I was heartbroken and couldn’t agree to what they were proposing. I took Billy home to die, the clinician had given him no longer that 6 months to live. They were trying take away my right as a mum to hope, but most importantly, they were trying to take away Billy’s right to life.
Completely numb and devastated I took my wee Superhero home to die. I bathed him, massaged him and wouldn’t leave him, not even to go to the bathroom. I used the toilet with him on my knee, for the fear inside me that if I left him even for a few moments to go to the bathroom, he might take a seizure and die.
I started to research on the Internet, when Billy was sleeping. Researching the word ” Epilepsy”. I was thinking knowledge is power, I have to find out more about this life threatening condition. I found an Epiltolgist in Chicago, Professor Nordli. I contacted his office and got all Billy’s medical files sent to him. I waited with baited breath to hear if he would see Billy? Eventually after 3 weeks, his office called and said Professor Nordli would see him. The cost £250,000.00. My heart soared! I will get the money I said, set up an appointment.
I launched Billy’s Ray of Hope campaign and got all media on board and flew to Chicago with Billy 12 weeks later. Professor Nordli spent the first week doing various tests on Billy and then sat me down. His words ” I think I can help Billy.” In tears I listened to his plan. It was so very simple. He wanted to wean Billy of the cocktail of drugs as he was on 5 drugs in total, one of which was a drug called phenobarbital, very similar to heroine.
This we did and Billy was put on a correct Ketogenic diet. For the next 16 was Billy didn’t have one seizure, I really couldn’t believe it. From loads of seizures per day to nothing was astonishing! Billy at this stage was 2 years old. He couldn’t hold his own head for a long period of time, nor pick up a toy, nor walk or crawl, he was just laying in his buggy drooling from the side of his mouth, completely depleted.
Professor Nordli suggested I get Billy into An Intense Physio Therapy Programme and see what we could tease out of him. This I did. I knew this was going to be tough as he would be training to learn the basics of life, but I had to give him a chance. The cost was a thousand dollars a week. Billy had 20 hours of Physio therapy per week , 4 hours per day Monday to Friday. The Physio first taught him how to hold his own head, they taught him how to sit, how to crawl , stand and walk.
Billy also had 3 hours per week of Aqua Therapy, amazing! He was getting stronger with every passing day. The first time he sat up on his own, I made the therapist lay him down again and he sat up again. I laughed with tears in my eyes. My wee Superherp had taken up the challenge and he was progressing, I knew he was going to win, he would walk one day.
Myself and Billy spent 2 years in Chicago on our own, so after 2 years of Billy’s seizure plan working and 2 years of Intense Therapy we were running low on funds. Our health minister always said he would fund Billy’s treatment if I could find it within the UK or EU. I researched again and found a doctor in Oxford that could take over Professor Nordli’s plan for Billy’s seizures and a Physiotherapy Centre on the same power as the one Billy was attending in Chicago.
Myself and Billy flew home and next day met at Stormont with the Health Minister who agreed to pay for Billy’s treatment in Oxford. I was just thrilled, we had done it.
I immediately set about renting a little house in Oxford and got Billy into the Physio therapy Centre. The cost £600.00 per week for 20 hours per week. I was so excited. At this stage Billy was able to walk with a walking frame. He already had learnt to sit and Crawl and stand. I knew with some extra work he would eventually walk on his own. I am just elated!
But sadly 8 weeks into Billy’s treatment in Oxford I received a letter from our Health department stating they were not going to pay for Billy’s treatment. I couldn’t believe what I was reading and had to read the letter about 3 times, before the words actually sunk in. I was again devastated as Health Minister had shook my hand in front of the media.
I didn’t have the heart to tell my family, as they were so happy that Billy had won his fight with Epilepsy, was so close to walking and we were nearer home now, so they could visit. But by this stage Billy’s Physiotherapy was already £ 80,0000 and I had to pay rent on the house I was renting, council tax and so on The department had paid nothing.
After much thought myself and Billy got on a plane and flew back to N. Ireland and went to my bank. I borrowed £25,000.00, got on a plane back to Oxford and paid the bills and then called BBC news to reported to Media what had happened. But this didn’t solve our situation. Billy still needed his treatment, so an 8 month legal battle followed. We lost on a technical hitch.
But eventually with the help of one of the Ministers civil servants, we got Billy’s treatment paid but nothing was backdated.
After 18 moths of continued Intense Physiotherapy in Oxford Billy walked and ran. Feeling rather privileged he choose me to be his mum.
We returned to N. Ireland and carried on with life; Billy’s horse riding, swimming and school. I go to school with him, as I have never had a child with Special Needs, so I’m learning to. What the teacher does with him I then implement at home.
My wee Superhero is such a happy contented wee boy and even though he still had an odd seizure , they were very much controlled.
12 weeks ago the seizures returned, and I have to say they are back with a vengeance! I am just heartbroken. On their return I immediately tried to access an urgent review for Billy within Ireland, U.K. And France, but to no avail due to long waiting lists. I have also tried the private route, but Billy has been denied access at every door I have knocked on. The only door open for him is Professor Nordli. He is now in the Children’s Hospital in LA.
Billy’s seizures are life threatening. When he takes one I have to administer 12.5 mg diazepam PR and put oxygen on him as he goes blue. One seizure can take his wee life or leave him disabled again. Mum have a to check a list when we get up in the morning. The first thing on my to do list is to check my little warrior is still breathing beside me, that he is still alive. And then I close my eyes and pray, thank god you have survived another day. I get to keep you one more day. Thank you God.
Professor Nordli thinks that Billy could be a candidate for surgery this time, which would mean he would have a good chance he would be seizure free for the rest of his life. The estimated cost is £300,000.00.
I launched another fundraising campaign about 10 weeks ago, Keep Billy Alive 2, and with the generosity of the public and various fundraising events already taken place we have raised to date £25,000.00. But Billy’s seizures were getting worse, so even though we had not raised our target, I had to put Billy on the plane urgently and bring him to Dr.Nordli here in Los Angeles.
I am praying Professor Nordli will give me back my right as a mum to hope, but most importantly he will give Billy back his right to life.
Billy’s medical bills are mounting here in Los Angeles and we desperately need help so Billy can have the treatment to keep him alive. We are in desperate need of help.
Donate what you can and help me Keep Billy Alive.
Billy’s mum Charlotte.
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