A journey to a happy ever after
Spende geschützt
Hello, thank you for taking the time visit this page.
This page is for my little lady Ellie who is 3.5 years old. Her facebook page is "Ellie's journey to a happy ever after"
Ellie is an amazing little girl has been through a lot in her short life and has overcome so much. Life has been quite restrictive for Ellie in many different ways. As a family we are determined to make a difference to her quality of life. Luckily Ellie has 4 siblings who are so wonderful with her and very protective and supportive.
Ellie has suffered with severe skin problems since she was born. Life have been a long cycle of medications, sleepless nights, infections, investigations, painful skin and a lot of isolation. She spent most of last year on a immuno suppression drug called Ciclosporin to get her eczema under control. As her chronic eczema became more manageable, if became clear that she was reacting to something. Allergy testing gave us some answers but despite daily huge doses of antihistamines and meds - it was still happening and then one day, we had a light bulb moment (excuse the pun) the reactions were happening in places with strip lights and when we were venturing out into the sunshine. I did some experiments and a number of appointments followed and we are at a stage where it is now suspected as solar urticaria/photo sensitive eczema (further intensive testing/biopsies happening for conclusive diagnosis in the next few months) What this means is wherever Ellie goes, if she is exposed to UV Rays from sunlight,
Fluorescent lights, low energy bulbs etc she will suffer very shortly after from hives, a wide spread rash, pain, swelling, irritation, fatigue, nausea, headaches. These reactions can last for a few hours up to a few days. As you can imagine, we do everything we can to limit the exposure. She is fully covered and wears a hat and suncream whatever the weather. She can't sit in certain areas of the house as UV creeps on through the windows and conservatory. She hasn't been able to attend a regular nursery, play out during the day, play with friends. Everything is carefully planned. Every action has a consequence, we spend a lot of time visiting hospital, applying lotions and potions, monitoring her so she doesn't injur herself leaving her prone to infection. For all she goes through, I'm on a mission to make life easier. This is where I need your help. I've set a target of £1000.00. This is a big ask. What this will be used for is UV window filters for our house, conservatory and car. This will allow Ellie to have the safe space she deserves. Any surplus will be put towards specialist suncream which isn't available on the NHS, UV protective clothing and an air conditioning unit for her bedroom. I will document where every penny is spent.
Ellie starts school in September 2016 and my goal is for this to be a minor inconvenience for her by then and we will have found ways to keep her smiling.
https://www.facebook.com/AlifeinthedayofEllieMay
This page is for my little lady Ellie who is 3.5 years old. Her facebook page is "Ellie's journey to a happy ever after"
Ellie is an amazing little girl has been through a lot in her short life and has overcome so much. Life has been quite restrictive for Ellie in many different ways. As a family we are determined to make a difference to her quality of life. Luckily Ellie has 4 siblings who are so wonderful with her and very protective and supportive.
Ellie has suffered with severe skin problems since she was born. Life have been a long cycle of medications, sleepless nights, infections, investigations, painful skin and a lot of isolation. She spent most of last year on a immuno suppression drug called Ciclosporin to get her eczema under control. As her chronic eczema became more manageable, if became clear that she was reacting to something. Allergy testing gave us some answers but despite daily huge doses of antihistamines and meds - it was still happening and then one day, we had a light bulb moment (excuse the pun) the reactions were happening in places with strip lights and when we were venturing out into the sunshine. I did some experiments and a number of appointments followed and we are at a stage where it is now suspected as solar urticaria/photo sensitive eczema (further intensive testing/biopsies happening for conclusive diagnosis in the next few months) What this means is wherever Ellie goes, if she is exposed to UV Rays from sunlight,
Fluorescent lights, low energy bulbs etc she will suffer very shortly after from hives, a wide spread rash, pain, swelling, irritation, fatigue, nausea, headaches. These reactions can last for a few hours up to a few days. As you can imagine, we do everything we can to limit the exposure. She is fully covered and wears a hat and suncream whatever the weather. She can't sit in certain areas of the house as UV creeps on through the windows and conservatory. She hasn't been able to attend a regular nursery, play out during the day, play with friends. Everything is carefully planned. Every action has a consequence, we spend a lot of time visiting hospital, applying lotions and potions, monitoring her so she doesn't injur herself leaving her prone to infection. For all she goes through, I'm on a mission to make life easier. This is where I need your help. I've set a target of £1000.00. This is a big ask. What this will be used for is UV window filters for our house, conservatory and car. This will allow Ellie to have the safe space she deserves. Any surplus will be put towards specialist suncream which isn't available on the NHS, UV protective clothing and an air conditioning unit for her bedroom. I will document where every penny is spent.
Ellie starts school in September 2016 and my goal is for this to be a minor inconvenience for her by then and we will have found ways to keep her smiling.
https://www.facebook.com/AlifeinthedayofEllieMay
Organisator
Kate Henaghan-Sykes
Organisator
