My nine-year-old daughter Bethany Henry has been fighting a battle with a rare genetic disorder for her whole life. Bethany suffers from something called tuberous sclerosis complex - a condition that causes severe insomnia, as well as up to 50 epileptic seizures a day. She was born with this condition but we didn't have the diagnosis until she was 18 months old. We spent a lot of nights in A&E when Bethany was having seizures not knowing what was going on. As a parent it's horrendous to watch your baby suffering and for no one to know what it is. Now she is still suffering, she hardly sleeps and at night she's screaming in pain, she is living with tumours in her liver, brain and kidneys where one is 10cm big.
But it's not just Bethany who has been fighting a battle - we have too. We've been fighting to get her the drugs she needs to help her live a better life. The drug is called Everolimus and although it's proven to help people suffering as Bethany is, but the NHS refused to fund Bethany's treatment.
What's crazy is that Everolimus is already used on cancer patients and our doctor says it is the best drug available for Bethany's condition - it could shrink her tumours and stop her fits. But because Bethany's tumour is non-cancerous we were told we could not have funding for Everolimus - meaning Bethany's kidneys and liver would be overwhelmed by the tumours. She has only been given pain killers while she is waiting
What's even crazier is that the cost of the subsequent kidney and liver transplants which Bethany would need to save her life would be more than the cost of the Everolimus.
Desperate to make NICE see sense and trapped in a bureacractic nightmare, we started a petition on Change.org calling on Jeremy Hunt to cut through the red tape threatening our daughter's life and to give Bethany a fighting chance. With everything moving at a snail's pace, were worried that Bethany could suffer a serious bleed which can be fatal.
Alongside our petition, we have been trying to raise the money to buy Everolimus ourselves - trying to crowdfund the £30,000 needed via gofundme.com/swdu5k to treat our daughter. We have even been trying to sell our house to raise the funds for the drugs and also cancelled our wedding plans and put the money towards the drugs for our daughter , which has put a terrible strain on the whole family but we know we can always get married later on as we've been waiting 15 years.
But this week we heard amazing news. Bethany has been given the drugs she needs!
Over 120,000 people signed our petition, we got national media attention and everything started to change. We were asked to resubmit our application for funding - and this time Bethany was granted the treatment.
Now we are hearing that the NHS is looking at its policy around these issues so that children with rare and life-threatening diseases who urgent need treatment could have applications fast-tracked.
Which is fantastic because I know Bethany isn't the only child in this situation, I've been ready about Abi Longfellow's case and I hope she too will benefit from these changes.
Throughout this whole campaign the generosity of people has been amazing. I want to say a big thank you to everyone that signed our petition or donated for Bethany. With the remainder of the funds we are going to buy Bethany equipment and other things to try and make her life a little less stressful and easier day to day and I thank everyone of you everyday for what you have all done for our little princess.
It's been a long journey - but finally we are starting to look towards the future. And it's a future where Bethany can start to feel better and we can enjoy our time as a family together.
It feels like a miracle.
James is 34, and partner to Stephanie 37. They have 3 children, Rachael aged 5, Bethany 9 with TSC and Brandon is 12.