A Life For Ethan
Donation protected
Introducing Ethan, aka Pea, my very brave 6 year old boy! Where does one begin with this heart-breaking story? Words cannot convey the enormity of the situation when living with eczema. Many people believe it is just a skin complaint which can be easily treated, and for some that is the case, but my little man things aren’t quite as straightforward.
Ok, so here’s our history. Born at 27 weeks my little Pea had a whole range of problems and was in and out of hospital for the majority of 3 years. During this time he began getting flare ups of what we thought was baby eczema which the GP treated with a range of emollients and moisturisers. It was then suggested that these flare ups were allergy related and so the testing began. It turned out Ethan was allergic to dairy and eggs and thus his diet was changed accordingly. Yet still the eczema continued. Only now the small patches of irritation had grown to large weeping, angry red areas all over his body. He would cry with the pain, we would be up during the night to cream and medicate him, he was dosed with strong antihistamines regularly during the day and night and nothing helped.
We were finally referred to dermatology at the age of 3 and Pea was diagnosed with Atopic Eczema and from there the fight really started. We tried every emollient, bath wash, shampoo; a whole host of steroids were tried to no avail, it was an endless fight to keep it under control. More allergy tests were carried out and found him to be allergic to raisins, dust, pollen, grass, nuts and fish; but in addition to this high sugary foods, including fruit also caused flare ups. Once again we were back on a restrictive diet and even underwent months of photo light therapy involving Ethan to stand in a giant UV light machine for 6 minutes three times per week and then be bandaged in wet bandages in between. This again proved futile.
We have spent a small fortune on homeopathic treatments, promised miracles and ointments all to no avail. We are now at the end of the road with the NHS.....at the age of 6 my brave soldier is on 2 different potent creams which are prescribed only to adults (which is a fight every time we try and collect them from the pharmacy) and chemotherapy to suppress his immune system and so far this isn’t working. It is heartbreaking to see him in so much pain despite his treatments. If this doens’t work there are no more options on the NHS except to just keep upping the dose.
And so this is where we are now: Ethan is at the point where he can’t go to an indoor play area due to the dust; he can’t play in the garden due to the grass; he can’t go to gymnastics which he loved because the bandages restrict his movement and the dust on the floor caused his fingers to flare up; he can’t go swimming as it hurts him so much and he bandaged too often; he can’t have a birthday cake, or chocolate or even a banana; he has to have constant blood tests because the chemotherapy causes kidney and liver failure; there is a chance he will never have children because of the medications he is on; he does not sleep properly due to the irritation and pain and so he is constantly tired and grumpy; he is struggling in school and even had to re-sit the year because he attendance is so low due to his illnesses; he has been in cold, wet bandages for most of his life; he screams whenever I bath him as it is agonising for him to simply sit in water; he cries that he is ugly; he has no self confidence!!! And for a mother to watch this it is heartbreaking. It kills me every time I bathe and dress him; I cry with him when he says he doesn’t want to be Ethan anymore.....this disease is controlling his life.
But something can be done – I am seeking assistance in raising funds to provide help and relief to this brave little boy. There is a treatment which is provided as standard eczema treatment in France, however as someone from UK we need to pay for this. The whole treatment plan is supervised by a doctor and has helped several other children in Ethan’s situation. I am asking that you please donate whatever you can, no matter how small.
A huge thank you for taking the time to read our story
xxxxx
Ok, so here’s our history. Born at 27 weeks my little Pea had a whole range of problems and was in and out of hospital for the majority of 3 years. During this time he began getting flare ups of what we thought was baby eczema which the GP treated with a range of emollients and moisturisers. It was then suggested that these flare ups were allergy related and so the testing began. It turned out Ethan was allergic to dairy and eggs and thus his diet was changed accordingly. Yet still the eczema continued. Only now the small patches of irritation had grown to large weeping, angry red areas all over his body. He would cry with the pain, we would be up during the night to cream and medicate him, he was dosed with strong antihistamines regularly during the day and night and nothing helped.
We were finally referred to dermatology at the age of 3 and Pea was diagnosed with Atopic Eczema and from there the fight really started. We tried every emollient, bath wash, shampoo; a whole host of steroids were tried to no avail, it was an endless fight to keep it under control. More allergy tests were carried out and found him to be allergic to raisins, dust, pollen, grass, nuts and fish; but in addition to this high sugary foods, including fruit also caused flare ups. Once again we were back on a restrictive diet and even underwent months of photo light therapy involving Ethan to stand in a giant UV light machine for 6 minutes three times per week and then be bandaged in wet bandages in between. This again proved futile.
We have spent a small fortune on homeopathic treatments, promised miracles and ointments all to no avail. We are now at the end of the road with the NHS.....at the age of 6 my brave soldier is on 2 different potent creams which are prescribed only to adults (which is a fight every time we try and collect them from the pharmacy) and chemotherapy to suppress his immune system and so far this isn’t working. It is heartbreaking to see him in so much pain despite his treatments. If this doens’t work there are no more options on the NHS except to just keep upping the dose.
And so this is where we are now: Ethan is at the point where he can’t go to an indoor play area due to the dust; he can’t play in the garden due to the grass; he can’t go to gymnastics which he loved because the bandages restrict his movement and the dust on the floor caused his fingers to flare up; he can’t go swimming as it hurts him so much and he bandaged too often; he can’t have a birthday cake, or chocolate or even a banana; he has to have constant blood tests because the chemotherapy causes kidney and liver failure; there is a chance he will never have children because of the medications he is on; he does not sleep properly due to the irritation and pain and so he is constantly tired and grumpy; he is struggling in school and even had to re-sit the year because he attendance is so low due to his illnesses; he has been in cold, wet bandages for most of his life; he screams whenever I bath him as it is agonising for him to simply sit in water; he cries that he is ugly; he has no self confidence!!! And for a mother to watch this it is heartbreaking. It kills me every time I bathe and dress him; I cry with him when he says he doesn’t want to be Ethan anymore.....this disease is controlling his life.
But something can be done – I am seeking assistance in raising funds to provide help and relief to this brave little boy. There is a treatment which is provided as standard eczema treatment in France, however as someone from UK we need to pay for this. The whole treatment plan is supervised by a doctor and has helped several other children in Ethan’s situation. I am asking that you please donate whatever you can, no matter how small.
A huge thank you for taking the time to read our story
xxxxx
Organizer
Terri Lynn
Organizer
