Unfortunately we were soon to discover that epilepsy has many ugly heads and is extremely uncertain, we also found out that there was no support available in our area. No one to turn to for guidance or just a chat about his deteriorating condition. The consultants answers, 'up his dose, up his dose' until he was on such a high dose of meds he began to shake, lose his balance (even more so than normal) and most heartbreaking of all he lost his beautiful sparkle, he became an empty shell of his previous bubbly 2 year old self.
Harry is now 3 and battles his epilepsy every day, going to pre school when he can and being as mischievous and cheeky as any other boy his age. He does however continue to have seizures in the night where he gasps for air and stops breathing, tonic clinic seizures and absent seizures where he can stare for long periods of time and is then confused and vacant afterwards. As a parent it is heartbreaking, you try all the new recommended medication suggested and try and do the best for your son but at the end of the day it is never enough. I live in fear every night that if I fall asleep? What if I don't hear him? What if this is his last night and he is gasping for air and I am not there to save him? I am his mummy, his protector that is my job that is why I lay awake night after night listening to him breath, I sleep next to him on the floor just to be close to him, there ready in case a seizure strikes and he needs me, just so he is not afraid and alone.
It is a mothers duty to protect her baby and that is why I am asking for your support. We are looking to buy Harry a new bed monitor, one that will work in his 'big boy bed' and set off an alarm if Harry's heart rate changes or he has a seizure alerting us in time to make a difference.
The amazing Jessica Wright, a friend and colleague of mine, along with her friends Hannah Louise and Sophie Brookman are competing in Muderella to raise money for Harry and to beat Epilepsy!! I can't thank you enough girls, I know you are going to do fab!
Anything you can spare, anything at all will be greatly appreciated, lets support these crazy girls in their challenge.
From the bottom of my heart, thank you xxxxx
Harry's Mummy and family xxxxxxx