Sophia was born in october 2016 a perfectly healthy baby , she psses her 6 week check her only issue was reflux however as sophia grew we noticed she wasnt supporting her head to well , she wouldnt push up during tummy time or roll over when on the floor . We raised these concerns with our health visitor who fobbed us off telling us she was fine would catch Up but call it parents instinct we knew something wasnt right , so we pushed to see a paediatrician who agreed she was worries she wanted an mri scan done and blood tests ,we demanded it all be done that same day we wanted answers for our girl .the paediatrician came back stating there was a neuromuscular specialist on call prepared to see us he came in had a look at sophia asked a few questions and then gave us the devasting news . He was almost positive pur baby girl had spinal muscular atrophy type 1 . Until that day in april 2017 we had never hears of this illness but it was confirmed the following week our girl did infact have this .

spinal muscular atrophy is a genetic condition with both parents being carriers of a faulty chromosome 5 , parents will not know they are carriers until they are faced with the devasting news that their child has sma .A child with sma's body doesnt make enough motor neuron protein causing them to lose all ability to move . Type 1 is the most severe with most babies not surviving past 2 years old and in that time needing feeding and breathing assistance until recently there was nothing that could be done for any child with sma but there has become a new life changing drug known as SPINRAZA which is making articificial protein for people affected by sma , giving them better lease of life some type 1 kids who where mot expected to live past 2 are now walking with aids due to this drug .sophia is receiving spinraza she got her first lumbar puncture the beggining of june and then another 3 within 10 weeks our girl will now require a lumbar puncture every 4 months for the rest of her life unless a cure is found. As u can expect all the equipment etc is very pricey which is why we have set ul this page . We did initially think we couldnt ask people for money for nothing but we arent asking for nothing it has taking a lot of courage for us to ask friends , family and strangers for any donation to help our princess along the way to a relativly normal life . All donations will go to sophia and any equipment she needs that myself and bryan feel are to out of our price range as many people know disability equipment is hugely expensive , we would probably still struggle with costs after a lottery win 😂 But all joking aside we greatly appreciate any donation big or small to help ease some of the worry our family have , through time we will be soing fundraising but for now we want to enjoy our girl and capture each new milestone