harrison's fund

Harrison sobbing uncontrollably for the best part of an hour, I had climbed on to his bed and hugged him, stroked his hair, rubbed his tummy, held him close, doing my best to console him... him repeating over and over again how much he hates his life and how weak he is.
Now I don't totally agree with my friend that said this to me, perhaps though I just haven't yet been beaten up enough by Duchenne, had it rip me open and grab hold of my heart yet. Squeeze the life out of it yet. Chip away at and break my will to hope enough yet.
This Sunday 26th June is Blue Hair Day, a brilliant annual flagship campaign run by Harrison's Fund cooked up by a bunch of big-hearted mums to raise awareness and funds for Duchenne muscular dystrophy.
The wheelchair is a constant reminder, more and more often it is in the car and not gathering dust in the garage, any trip that involves a now short walk requires the wheelchair to come with us.
I do not want Theo and Oskar to die before me. No, I want them to live far beyond me, to experience all of life, its many facets and stages. What sustains us, Klara and I, is trying to realise this, to do all we can to ensure they, and other Duchenne boys, lead long and full lives...
The parent of a disabled child, you are suddenly forced to look with a hard and discerning eye at the society your children live in. Will it nurture them, in spite of their condition, or will it neglect them?
Last year when the Manchester dog's home went up in flames I was watching the television and my first thought was how proud I felt that the UK was such a generous nation of animal lovers. However this was swiftly followed by my second, which was, how can we possibly justify raising of £2million for animals when there are children like my eight-year-old son, Harrison, dying every day from fatal illnesses. Harrison has Duchenne, a disease that means he probably won't live to see his 20th birthday. In 2011 I founded Harrison's Fund to raise money to fund research to develop a cure.
The newspaper version of the ad READ MORE: Dad Stands By 'I Wish My Son Had Cancer' Campaign Hidden Charities of London These
Debut Contemporary, its artists and Barry Martin and Klara Taussig-Cecmanova as co-curators with Samir Ceric, the gallery's director, decided to join forces to raise funds and awareness for the Harrison's Fund Charity. Located in 82 Westbourne Grove, Notting Hill, London, the show will continue until the 31st of January.
The vast majority of smaller charities are parent led and born out of a desire to have some element of control over a situation that is often out of their control and with little hope. ..
Harrison is now nearly 8, and we live each day with the knowledge that because he's got a duplication of an exon of his dystrophin gene, his symptoms continue to progress and he continues on a steady and rapid physical decline.
Harrison was diagnosed with Duchenne on January 25th 2011, a day we will never forget. Hearing those words, 'no cure', and 'prepare yourself for the fact that you will bury your son' flips your whole world upside down.