Look what surprise beth came home to ðŸ˜ we would like to say a massive huge thankyou to everyone whom made this special quilt and send a special hug to each and every one of you, the smile and shock on Beth's face was priceless, she is having quite a few health issues at the moment and been suffering with depression so to see how much this as made her smile was lovely, beth says you guys rock and says she loves her new quilt ðŸ˜Šxxx
bethany was born on the 10/01/2001.At 12 days old I had to take her to the gp has her eye was all sticky this is when the GP informed us that Bethany had a heart murmur and was I aware of it (I wasn't!) The following week we had an appointment with a cardiologist who carried out an ECG and informed us beth had pulmonary stenosis and Hypertrophic cardiomyopathy which he said was consistent with noonans syndrome (at the time I was not aware beth had noonans syndrome so it was quite alot to take in and a very emotional time). Beth had keyhole surgery at Leeds general infirmary in December 2001 to correct her pulmonary valve up until the operation beth had been a very sleepy baby,she had constant problems with constipation (needed lactulose,suppositries and manual help to help her toileting needs)she would not take her milk/food her weight gain was very slow.after the operation the first thing everyone noticed was how more alert beth was and how she now had colour in her cheeks. Beth was constantly ill with colds,coughs,chest infections and constantly needed medication to try fight infections then in 2003 she was given an inhaler (salbutamol)to try ease her night-time cough luckily it worked but then in 2005 it was decided beth needed a preventitive inhaler also as the asthma was worsening,in March 2007 beths cardiology team found beth had several ASD's,left ventricular hypertrophic cardiomyopathy,supruvalvar stenosis and her pulmonary stenosis had worsened so it was decided she needed open heart surgery which was carried out on the 13th March 2007 the operation took 5 and half hours and was successful in correcting beths problems she is currently left with mild hypertrophic cardiomyopathy and pulmonary stenosis which she attends cardiology yearly for the rest of her life. beth always suffered with severe bruising from the age of two and after much prompting from myself beths peadiatrician finally referred her to sheffield childrens hospital to see the haematologist team they carried out numerous blood tests and a platelet aggregration study and found beth to have factor XI defiency,slow clotting times,anaemia and she was borderline for von williebrands disease beth needs medication for bleeding (periods) and when she has bad lumpy bruising,beth was also diagnosed with epilepsy in october 2014 after struggling for two years with concentration,absences,headaches and sickness which was greatly affecting her school/social life she is now taking epilim 500mg twice daily to help control her seizures.beth is currently awaiting an appointment with an orthopeadic surgeon to discuss botox injections in her legs as her hamstrings are very tight and her physio believes it may help beth to do her pyhsio execises to try stretch out her hamstrings as she is concerned the more beth has growth spurts the tighter it becomes and will cause beth even more pain than what she already suffers with from her arms,legs,back and chest (her chest is unusually wide and sticks out so causes constant pulling on her back).beth attends CAMHS once a fortnight as she suffers with low self esteem,confidence and anger issues in 2012 beth was at a very low point where she was self harming due to not being able to cope with her health issues alongside bullying that she was sufferring from her peers this is why the CAMHS referral was made originally, without this service and beths fabolous counsellor I hate to think where beth would be now.Beth still has issues with feeding and toileting which she is still on medication for 14yrs later!Beth is an inspiration to others and a true hero has even throughout her pain and issues she continues to be a great support to others and always puts others before herself she is a very determined,caring,loving,supportive and beautiful young lady whom I am very proud of and love with all my heart.