Christies stem cell treatment
Donation protected
After speaking to the stem genex specialist they have said with Christies illness she will need it again in a few years hence why go fund me is reopened
If you look at the pictures you kind of get an idea of my life, as a child I was bullied for the way I looked because of my illness, rubber lips was a favourite of theirs, it was extremely hurtful and zapped me of my confidence. Then as I grew up I had a very short patch of time were things seemed to improve, I started getting a little confidence back and even went to university then just as I started to think that things were getting better and might stay that way suddenly it hit me ten times as hard. Now my whole body swells and the agony is indescribable. I never want another child to go through this, I watch my young nephew like a hawk terrified that this could happen to him. I want to be the guinea pig for me to get better and so that no one else has to suffer like me. I can then fundraise for anyone else that suffers with this and lobby for the treatment to be available here. We need to raise awareness of this condition so that it is researched because at the moment it isn't at all. For that I will dare to put these embarrassing pictures out into the world.
More about the condition from Amy's POV:
My partner is 33 years old she first developed Melkersson Rosenthall syndrome when she was 7 years old which started as her lips swelling and her face to which she was bullied beyond belief. In the last seven years it has progressed to her epiglottis larynx lips face stomach arms and legs it has caused type 2 steroid induced diabetes a paralysed right diaphragm. It means she can only walk a short while, she misses out on seeing her nephew and she can no longer have children as her adrenal gland has stopped functioning. The doctors have no idea how to help in the uk as it is so rare, but have said that in America they offer stem cell replacement therapy that is used to stop the affects of an autoimmune illnesses. All in all it will cost 14000.She is an amazing person and her main dream was always children and now she can't have that I'm hoping to get her this treatment that will stop her being in constant pain stop her having attacks of the illness that land her in intensive care and get her somewhere near to a normal life.
if you can help that would be amazing all questions gladly answered.
If you look at the pictures you kind of get an idea of my life, as a child I was bullied for the way I looked because of my illness, rubber lips was a favourite of theirs, it was extremely hurtful and zapped me of my confidence. Then as I grew up I had a very short patch of time were things seemed to improve, I started getting a little confidence back and even went to university then just as I started to think that things were getting better and might stay that way suddenly it hit me ten times as hard. Now my whole body swells and the agony is indescribable. I never want another child to go through this, I watch my young nephew like a hawk terrified that this could happen to him. I want to be the guinea pig for me to get better and so that no one else has to suffer like me. I can then fundraise for anyone else that suffers with this and lobby for the treatment to be available here. We need to raise awareness of this condition so that it is researched because at the moment it isn't at all. For that I will dare to put these embarrassing pictures out into the world.
More about the condition from Amy's POV:
My partner is 33 years old she first developed Melkersson Rosenthall syndrome when she was 7 years old which started as her lips swelling and her face to which she was bullied beyond belief. In the last seven years it has progressed to her epiglottis larynx lips face stomach arms and legs it has caused type 2 steroid induced diabetes a paralysed right diaphragm. It means she can only walk a short while, she misses out on seeing her nephew and she can no longer have children as her adrenal gland has stopped functioning. The doctors have no idea how to help in the uk as it is so rare, but have said that in America they offer stem cell replacement therapy that is used to stop the affects of an autoimmune illnesses. All in all it will cost 14000.She is an amazing person and her main dream was always children and now she can't have that I'm hoping to get her this treatment that will stop her being in constant pain stop her having attacks of the illness that land her in intensive care and get her somewhere near to a normal life.
if you can help that would be amazing all questions gladly answered.
Organizer
Amy Newport
Organizer
