Mason was born at 29 weeks by emergency C section. I was very ill with pre eclampsia the only cure was to deliver Mason early or we both could have died. I recovered well but Mason was 2lb 5oz and now had to fight to survive.
The build up to delivery of Mason is a bit of a blur and a mixture of emotions, the unknown, fear, excitement and the what is life going to be like going forward? Nothing could have prepared us for the emotional roller-coaster we have been on. Monitors and wires all attached to his tiny little body, he was fighting to survive and this was our life for 8 weeks and 4 days after his birth.
WE MADE IT! The day came were we could bring Mason home, little did we know that this was the start of a new journey that we wasn't expecting.
Mason wasn't gaining weight, he had failure to thrive, no matter what we tried we couldn't seem to get him to put on weight. Feeling helpless we pushed the doctors for tests. Months later they came back and said Mason had Chromosome Deletion, this is a rare condition and because of this they couldn't be certain on how this would effect Mason going forward, or what his future could hold.
By this point it was clear Mason was struggling with his development at 6 months old there was no sign of head control, you could pick him up and his head would flop. Our concerns were confirmed and we started a life of appointments. This includes physio, occupational, play therapy, speech therapy, doctors and specialists to try and give Mason the best opportunity to develop and grow.
I tried to continue my 'normal' life my maternity leave was coming to an end and I needed to put plans in place so I could return to work as a Retail manager for a high street jeweller. It was so hard to leave Mason he was only growing at a 3rd of a rate of your average child. I was determined I could do both go back to work and give Mason everything he needed.
A week to go until I returned to work and Mason was blue lighted to hospital, our world fell apart my little baby boy had a seizure! This was the start of Mason being diagnosed with Epilepsy. I went back to work and it nearly tore me in two and I felt like my life was falling apart. Masons medication wasn't controlling his seizures and on the 27th October we nearly lost our brave little man. He aspirated and went into a seizure for 45 minutes. I thought my world was falling apart but now it was falling apart.
Mason spent 2 weeks in an induced Comma in Leicester's critical care unit with 24 hour supervision, we took each day as it came and didn't leave his side. The doctors were telling us one day at a time and we sat and watched Mason fight his way back to a full recovery. I never returned back to work after that and I haven't looked back since.
Mason currently requires specialist therapies and equipment to do basic tasks for his day to day life and help him develop. So far the NHS have funded all necessary tests, treatment and equipment. However now he needs a Pea Pod chair so when he is tired from exercises to encourage him to learn to walk or after a seizure and medication. Mason will have somewhere safe and comfortable for him to rest. This is not available on NHS so we have to go for charity funding but that could take up to 10 months an we don't have 10 months to wait Mason needs this support now, to make his life a little easier. THIS IS WERE WE NEED YOU!
If you could donate in any way however big or small towards keeping Mason on a path of progression and development it would Make his day! It would be a huge improvement to his life and we could get this pea pod chair within a month.
The chair costs £1,000 so any donations would be gratefully received please feel free to share our story with your family and friends to help us hit our goal and get our little boy the support he needs in this new chair.
Thank you for reading Masons story we are so proud of him, we are learning everyday how to adapt our lifestyle to his adapting needs and challenges. We are constantly thinking about how his chromosome and epilepsy will effect our life's in the future as Mason gets bigger and heavier his condition becomes more apparent but we will do our best to keep him smiling every day!