When Drew and I met it was a whirlwind, sounds cheesy but we just fell for each other straight away. We had a very happy life together then after nearly three years together I fell pregnant. I was, if I’m honest terrified when I found out. I didn’t feel ready to be a mummy and that frightened me. Now I am a mummy I realise you’re never really ready for what lies ahead. I had a good pregnancy and Alfie was born on 24th September 2011. He was 2 weeks late so I had my waters broken after 36 hours of weird contractions which didn’t ever feel right. The midwife said to see how things go but my contractions were all over the place and Alfie’s heart beat was very high at times so I think I should’ve probably had a caesarian but we pushed on through! After 36 hours he was born very quickly after my waters were broken. He was blue and not breathing on arrival but quickly fed and became well enough to go home.
I feel like I was deeply effected by Alfie’s birth. I became very anxious about him and I wish I’d been offered some support with what happened at his birth.
Alfie was as far as I understood a normal, happy, healthy baby until he was Vaccinated at 2 months old. I believe he had reactions to his vaccines. He screamed all night and became very unhappy. It’s unclear as to if he reacted because of his genetic mutation or that’s what triggered the mutation im sure we’ll never know. He started to get constipation and bad skin which was hard to manage. We were never told about contraindications or side effects so I wasn’t aware of what to look for. I felt I must carry on so we carried on following the vaccination program and he carried on having reactions. When he was five months old he was taken to hospital as he had breathing problems and wouldn’t eat. We spent one night in hospital but he seemed to recover so we were sent home.
At eight months Alfie had his first tonic clonic seizure in bed at home. I had stopped breast feeding him a few days before. I really struggled with feeding him and was always in pain. I have since taken him to a cranial therapist who found Alfie had a dropped palate bone in his mouth which wasn’t picked up on his baby check so no wonder I was in agony when feeding him.
We took Alfie to hospital by car. He was having seizures for nearly four weeks. He was given the normal anti epilepsy drugs and nothing stopped the seizures. We ended up being transferred to Great Ormond Street hospital where we were told we might loose Alfie but as a last resort they would try steroids, these worked and he stopped having seizures after four weeks. Alfie was diagnosed with immune responsive epilepsy and we eventually went home after a further six weeks in Warwick hospital weaning Alfie off all his medication. We were in hospital for a total of three months. Alfie has since been diagnosed with PCDH19, a rare form of epilepsy which only usually effects girls. It is not inherited from his parents, and I believe very much that it was triggered by vaccination reactions. Great Ormond Street hospital did confirm to me that many genetic problems can be triggered by vaccination or virus due to the fever the body produces.
We have tried many pharmaceutical drugs over the last five years to prevent Alfie from having seizures but they have got progressively worse with no seeming effect from these drugs. We have used the combination of epillim and clobazam which seems to possible lengthen out the space between clusters but other than that no drugs have had any effect.
We have done a lot research into alternative treatments and believe that medical cannabis could give Alfie a chance at more seizure freedom and a much better quality of life. I have contacted many parents who are getting amazing result using medical cannabis and are having no side effects. Medical cannabis also seems to improve cognitive developement in children like Alfie with neurological conditions.
We are now campaigning for him to have a chance to use medical cannabis in his own country along with all other children with epilepsy that is unresponsive to pharmaceutical drugs. We are also fundraising to enable us to take Alfie abroad to give him the treatment we believe will help him as it is currently still illegal in this country. We feel unable to wait until the law is changed in the UK.
We want our baby back, we want to give Alfie the chance to a happy life which he massively deserves. He’s been through more than most go through in a life time. He deserves to have a wonderful life full of joy not the pain he currently faces.
Thanks for reading.