Please read the story below and help if you can.
**Please note that the initial target of 600 was for the safety matress. We are still wanting the bed and saferty equipment i was too afraid to go higher due to the matress needing to be replaced asap as its so important for Joanne. I personally added all of the equipment they needed. I have extended target to 5000 and that covers all we need listed below. Thank you. Elissa **
Please help my friend Joanne raise money to pay for equipment her son so needs to ensure his safety.
Ethan suffers from Lennox Gastaut Syndrome, atrial Septal Defect, ADHA, Severe learning difficulties, inward curvature of his legs and a dormant blood pocket at base of his brain and vitamin d and iron deficiency.
Please please Help...
I am helping to raise the target we have indicated for my friend Joanne so she can provide the best life for her very poorly son.
Joanne has been through so much with her son Ethan who became very poorly after an accident playing football at school in 2006. Ethan was once a very normal healthy boy and with the most unfortuate of accidents he was never to be the same again.
Ethan suffers from Lennox Gastaut Syndrome, atrial Septal Defect, ADHA,severe learning difficulties, inward curvature of his legs and a dormant blood pocket at base of his brain and vitamin d and iron deficiency. All after a head injury playing football at the age of 5.
My heart breaks for Joanne who has 3 children. She is struggling so much with her son and after learning that the NHS and local charities won't help fund the equipment Ethan needs to ensure that he doesn't hurt himself,I decided to try and raise the money for her using Crowd Funding.
Joanne doesn't qualify for help and due to the severity of his condition she cares for her son herself and is only entitled to a very small amount of carers allowance.
The Charities Joanne contacted have waiting lists and only help on an emergency basis which they state this is not one. Ethan needs to be safe during the night as most of the main fits are at night and the equipment we need is to ensure his safety as its the leading cause of death for the condition.
After coming out of hospital Ethans health Went downhill really fast, Ethan has 40+ seizues a day from very small seizures to severe seizures.
The equipment I am hoping to raise money for is for his safety. Ethan needs a long list of safety items. The costs are not cheap and joanne is struggling to get the equipment.
Also needed within the overall cost is a vegal nerve stimulator these devices are meant to have a battery life of 10 years but he's on his 3rd since 2008 as its on the maximum settings now. Ethan lashes out and can be very aggressive on a regular basis which due to his condition puts him at serious risk of hurting himself.
Being a mum myself it breaks my heart that her once so healthy little boy went to school and was never the same again. She has a daily struggle on her hands. Imagine being a mother and knowing that the leading cause of death from the seizures is at night 3/5 die that way thats why this is such an important Crowd funding request.
First of all ensuring Ethan is safe at night and helping My brave friend to get a good nights sleep. Which is essential for her to give her boy and her other 2 amazing children the best of her.
Before His accident :( Then after. :(
Joanne can not work because she has to look after Ethan 24 hours a day, So as you can imagine money for living is hard to come by and with the added expense of the safety equipment its a continous struggle.
Ethans diagnosis Lennox gastaut syndrome means that his future doesn't look promising. He was 5 years old when he had his accident and it seems he is still stuck in the mental age of 5. He also has a hole in his left ventricle of the heart and a bleed pocket at base of his brain that could grow or pop any time, this is hard when he falls a lot with fits.
Due to 8 years of steroids Ethan has weak bones and is always breaking his fingers and toes. He bruises very easily too. His meds are Epilim, lamotrigine, rufinimide, clobazam, vimpat, prednisolne, omerizole, Sytron, movicol, midazolam, cholecalciferol and RESPIRADONE.
Ethans specialist Dr Gabriel Chow who works at the Queens Medical Centre in Notts says Ethan is one of her special cases, The reason for this is Ethan does not respond to medical treatment. Ethan also has a vegal nerve stimulator in his chest.
Ethan loves Manchester United and I was hoping we could raise the additional money so Joanne can give him some well deserved treats. He loves Eddie Stobart they spend hours spotting them and taking photos. His dream is to meet Mark Dixon and ride in a Phoebe Grace. He also loves Trains and can sit for hours spotting them taking pictures and travelling around in them.
My Idea was to add on additional costs so that Joanne and her family can take Ethan to Euro disney on the Eurostar as he absoutely loves Micky Mouse. They can not go abroad because of the fits, Making Euro Disney the perfect destination as they can't fly. Meaning poor Ethan has to miss out on being able to see the world.
Joanne also has two other children who also deserve the Euro Disney trip. The are amazing with their brother and always have been. They deserve sleepless nights too. A family holiday will be such an amazing treat for them. They all deserve it after a very very tough few years.
I have listed some of the items below so you can get an idea of what we need to buy.
Emfit tonic clinic seizure and white sensor £320 +vat.
Micro transmitter £195+vat. Emfit power supply £30+vat.
Pulse guard sensor starting at £212+vat at epilepsy alarms.uk.
Safety bed start at £465 upwards
Breathe-zy epilepsy anti suffocation pillow. approx £50
Head protex soft shell helmet from £113.99.
Monitoring System - Approx £500
Euro Disney - approx: £1500
A trip to Manchester United for the family: £300
Safety Bars, Safety windows, Safety doors, Safety Gates (not child gates as Ethan is 5ft 2 and 64kgs) - Approx: £1000
This is just an idea of the equipment needed and the costs. Its endless.
The money will also help safety proofing his bedroom walls and floor, a specialist safety seat for the car is also required, a safety barrier for the stairs, They can not use normal stair gates would not take his weight as he is 5ft 2 and 63kg. Also the cost we are trying to raise will help to secure the window and door to his bedroom.
Also a monitoring system so they can watch him on a 24 hour basis. One that monitors and alerts them if he moves from his bed.
Please help. This safety equipment is vital.
Joanne sent me the picture below and I cried. Such an amazing shot taken by Ethans little brother. :)