My 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
Harrison 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!