Thank youMy beautiful boy has been in hospital with pneumonia, finally home now and the smile on his face when he saw all his favourites in one place is something I will remember always!
Thank you to you and all the Love Quilts team, this is such a wonderful thing to receive from genuinely caring people...and we are humbled xx
|
BiographyHarrison was born in October 2007 after an easy, nothing out of the ordinary pregnancy and if I'm honest not that much of a difficult birth. Obviously I don't tell my husband that, wouldn't want him to think I'd ever do it again!
Harry weighed in at a massive 6lb and we were subsequently released into the big bad world the following morning.
A new baby is never an easy thing to accommodate but I think my husband and I adjusted well until our world totally fell apart! At around the 6month mark I was feeding Harry a particularly messy dinner when I noticed that he was intermittantly 'jumping' like he had hiccups. Harry ended up in Peterborough General Hospital in their paediatric high dependency unit following a seizure that lasted over 2 hours! He was massively sedated and I can honestly say I have never been so scared in my life.
We were sent home after 3 days but were back within 2. This time his seizure started at bath time and lasted over 3 hours. We were transported to Addenbrookes Hospital in Cambridge where we spent 10 days in paediatric intensive care and met someone that I will be eternally grateful to.
Dr Alisdair Parker, senior neurology consultant, saw us a further 4 times following prolonged seizures, before he passed us a leaflet explaining that he was fairly convinced that Harry had Dravet Syndrome. A DNA test confirmed the gene mutation approximately 6 months later.
Harry is now 12 years old, he continues to have seizures daily. He has a developmental age of just 12/18 months, he has no speech, is doubly incontinent, sleeps for not more than 3 hours a night, can walk only short distances with the aid of leg splints and has been diagnosed as severely autistic. Harry is unfortunately a typical young Dravet sufferer, and a beautiful, happy, busy little boy! He is our little Warrior!
|
