me and my mum plus few others are doing a boxing day dip to help raise money for tofs. this is a charity very close to my heart due to my son Draven having this condition.
everyone that had read my status on facebook - the ones i have writen whilst ive been crying, angry, smiling, thankful - just every emotion possible i think. i have tried keeping everyone updated through the worst and best moments of Draven's fight. i just want to say thank you for all your support....
and for those that dont know Draven i can try to breifly describe how much he has been through these last 7 months. soo much to remember but if you want to know more im more just ask...
Draven was born on the 15/02/2010 at 7pm by induced delivery at 36wks due to me having polyhdramnios during pregnancy.
Draven had many problems when he was born, mainly due to having TOFS. he also had a rare case of it. he was taken from the hospital i gave birth in ashford kent to Lewisham in london at 3 o'clock in the morning with out me, only being able to hold him for less then 5 minutes. once he arrived there,he was tested and discovered many things but the most serious problem was he had a connection joining his lung to his stomach. this was causing his stomach to inflate so much it almost burst. he was then rushed in to theatre (although i was still in ashford waiting to be discharged) for 9half hrs surgery when he was 16hrs old. he had three major operations in one which for many reasons saved his life.
He later went on to have another 12half hour op to disconnect his stomach and lift it in to his chest to make a join. he was in intensive care at lewisham hospital for 7 months untill he was transfered to our local for a week. All this time he had only been able to meet his 2year old sister once for only an hour and half. with a total of 26hours in theatre, dehydrating so much that he become life less, becoming colonised with c positive entrobacter and barrier nursed for 5 months, having septicemia, e-coli. just a few of the many problems we had to face along the way.
this is a real brief basic idea of what my son has been through and still his fight hasnt ended. along side the condition he has a liver problem which we are under kings college for with a biopsy booked for beg of oct and spinal and hip problems which we are still waiting for the test dates to come through. so still lots of questions unanswered.
TOFS has helped in so many different ways. it cost us £25 a day to see our son, apx driving 150miles a day. with no help what so ever from the goverment and a 2year old child we panicked every day not knowing if we could afford to see our child the following week. TOFS helped us by giving enough money to cover a 5week period. considering this is a rare condition with hardly any awareness it was amazing that they could even consider to help us. i really have no idea how we would of made it towards the end of Dravens stay as we had no money left.
we would like with your help to raise money just so they can continue their work of helping familes cope.
its such a scary time and having to learn and try to understand exactly what is wrong with your child and why was seriously frustrating. soooo many questions with no one to really give u answers you feel alone. tofs was there for me........
so please, what ever you feel u can spare
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