You are here

Devon Angel

My granddaughter Devon Angel was born in October 1998 with PFFD. She was born in a suburb of London. She also had a hole in the heart (which has now closed up). After spending two weeks in Neo-Natal, she was allowed home with my daughter and her partner. Those early days are cloudy for us all as we were all in a state of shock and couldnt understand the complexities of her condition. My daughter is a dancer and Devon`s father a healthy, sporty footballer. How could they have a baby with half a leg? It was beyond our comprehension and filled us all with dread and confusion.
From the very beginning Devon was a fighter. My first glimpse of her lying naked on the "open" cot in Neo-Natal was one of astonishing emotion. With tubes everywhere, a tiny bonnet on her head and a white covering her lower limbs it was hard to imagine anything being wrong with her. She looked so vulnerable. I promised her I would watch out for her and keep her safe - I wanted to put everything right.
As the months went by we realised what a wonderful, lively, determined little baby Devon was. She had a smile to brighten any day, a smile to eradicate our fears.
Two years ago we discovered Devon had a "high-pitched" deafness. She now wears hearing aids, but sadly speaks with a deaf voice. Academically she struggles and she is finding it hard socially. Family problems have not helped her and i feel her disability is overlooked by her parents. I feel it is now time for Nanny to step in to try and give Devon a better future. A future that does not involve being pushed around in a wheelchair. This week she had to use one as she gets so tired lugging her prosthesis around keeping up with her mother. I worry so much for her as she grows older (and bigger), already she complains of back ache.
I would like to hear of any suggestions as regards posture training. Also, is there anyone from the UK on this website?
Devon wants to dance just like her Mum ! Please God - one day she will !


Hi my name is Melissa and my husband and i have a 6 yr old boy who has bi-latteral pffd and fiblua hemmumilia. He keeps me busy. I know your looking for advice the only thing that i can say is this. give it time. But don't give up it's a long road as you know but the rewards come so few and far between. But the wait is so worth it. As far the her prostetics make her wear them no matter what. I know it is easier said then done. Tough Love somethimes is the best cure. I know sometimes with my son that is what i have to do becuase i know he can do things, but he will say he can't and i tell him well then i guess you wont do it then. And 5 mintues later he does it all by himself. Kids want to know how much you will help and wear you draw the line. For us we have adughter who is 3 and we expect the same from both our kids no one is treated different. If you have any ?'s plz feel free to email me

Our daughter Jess was born in Aug 2003 and she has bilateral PFFD Aitken class D. She has worn prosthetics since september. They are exhausting, no doubt about it, but the more she wears them the easier it gets for her and the more proficient she becomes. She has a determination that has to be seen to be believed. We also live in the UK, in the midlands and would be more than happy to help in any way we can. feel free to get in touch.
Jo X