It is now a year since we started this fundraiser, so it is a good time to update things for everyone.
As many people know, we spent the last year trying to save Hannah’s joints from the effects of osteoarthritis and a connective tissue disorder. With everyone’s support she had two surgeries last year in London in the hope her jaw function could be restored.
Sadly, they were not successful as the damage was too severe, and the only option available now is double jaw joint replacement.
This is a very serious surgery where the jaw joints are replaced with titanium prosthetics which are custom made in the USA. The surgery has never happened in Ireland but has been done in the UK, Europe and the States for many years.
I have spent the last three months trying to get permission to apply to have the surgery done on the Treatment Abroad Scheme, however we have still not even been able to submit an application. As Hannah’s condition is rare it has been incredibly difficult to get medical support here as doctors aren’t familiar with it. If we lived in Northern Ireland we would automatically be referred to a joint replacement surgeon in mainland UK, but there is no pathway here so we are left in limbo. We will continue to lobby the HSE and Simon Harris to reverse their decision not to refer Hannah to the UK and will update if we have any success.
However, the past two weeks have been incredibly tough as Hannah has deteriorated once again. Her only way to get any nourishment is from enriched drinks the dietician has provided but at times she has been in too much pain even to drink those. It is so frightening to see and made us realise that we cannot wait and leave her deteriorate any longer. It is 6am each morning before she manages to fall asleep as the pain is worse by nightime. It is just too much seeing things getting even harder for her.
Once they are ordered, Hannah’s joints will take at least four months to be made, but we have to pay for them beforehand. So, we need to raise this money as soon as possible to get things underway. We hope that once they are ready that medical procedures will have resumed after lockdown and that her surgery can go ahead. The cost of her surgery is at least €80,000. We have updated the goal to €120,000 to include this. It is a huge amount of money but we have to believe in a miracle.
We are asking if people can please share this fundraiser and help get her there as soon as possible.
She has been the bravest person possible and tries her best to keep hope alive that she will get to have a life again. All we want is to hear her singing and laughing, eat a pizza, walk in the woods and do everything a 19-year-old should be able to do. All these things that seemed so simple would be such a miracle to us now!
Thank you so, so much to everyone who helps us get her there.
May 29th, 2019
Our 18 year old daughter Hannah developed severe, incapacitating jaw pain in October 2018. Over the past few months we have learned that she is suffering with degeneration in her jaw joints which has led to her losing jaw function.
She has not been able to eat since Christmas 2018 and is surviving on emergency nutrition drinks from her dietician.
Hannah has been bedbound for 5 months as it is too uncomfortable for her to sit up, walk or stand.
Even talking can trigger unbearable pain.
Her condition is not well understood in Ireland and the treatment outcomes here are poor, generally involving a lifetime of pain.
We have tried every kind of treatment available to us over the past 8 months but she has deteriorated rapidly.
The only hope we have at the moment is to bring Hannah to an oral maxillofacial surgeon in London who is a world leader in jaw joint treatments. He has put forward a plan of surgery and stem cell treatments with the hope of saving Hannah's jaws so she can live a normal life.
At the moment every day is spent trying to manage Hannah's pain and keep her strong enough bear it.
It is such a distressing illness to have and time is of the essence as her condition gets worse each week.
It is so hard to see her suffering every day and we need to bring her to London for treatment as soon as we can.
We are so grateful for any help that anyone can give Hannah, either to contribute to the campaign or sharing it with others.
Thank you for your support.
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