Dedicated Mum, Charlotte Caldwell, maintains desperate battle to keep 11 year old son, Billy, alive…
Castlederg’s Charlotte Caldwell is a highly dedicated mother who endures a constant worry in looking after her 11 year old son, Billy, as he suffers from a deadly form of epilepsy.
It has certainly been some time since Charlotte last had the luxury of an unbroken night’s sleep. On countless occasions every night, as she finally drifts off to sleep, she awakens with a start and checks whether Billy is still alive.
Unquestionably an exhausting way to live, but Charlotte has been left with no choice as she struggles to raise enough money to pay for potentially life-saving treatment, which is not available in Northern Ireland.
Eleven year old Billy suffers from a potentially fatal form of epilepsy.
In the past week alone, Charlotte had to rush her son to hospital after he suffered three seizures in one day.
He began to suffer seizures when he was just 14 weeks old and at his worst, he experienced more than 100 seizures in a day.
“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.”
She is thus 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 initial treatment in Chicago and years of rehabilitation in Oxford, Billy was practically seizure free for the past eight 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.
As part of her campaign, she made the difficult decision to film Billy during a seizure.
The harrowing images are part of a longer video created by Charlotte that reveal the devastating reality of living with a child with severe epilepsy. It begins by showing the youngster walking, laughing and enjoying life, but cuts to footage of him in the middle of a seizure.
“It was a hard decision to film one of Billy’s seizures but I want people to see what it is really like,” explained Charlotte.
“Billy has a good quality of life, despite everything he can walk and enjoys things like horse-riding, but I can already see him getting worse with the seizures.
“It has only been a few weeks but I can already see the regression, I can see his right eye is turning in and that’s the damage being done to his brain. This time around Billy is a bit older and there is even the chance he could have surgery that might stop the seizures altogether.
“I truly believe if Billy is left and not given a proper review, if he doesn’t get it quickly and a treatment plan isn’t put in place, then these seizures will take his wee life. I can’t allow that to happen.
“As his mum, if I were to sit back and let that happen, I would be failing my child. Any one of them could kill him and I am terrified I’m going to lose him.”
“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.”
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 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.”
To find out more about how to support the campaign, email firstname.lastname@example.org or ring 07540 356 389; 07968 508 250; 07749 315 345 or 07899 910 358.