Oh my goodness Charlotte's quilt has arrived! It's not often I am left speechless, but the obvious hard work, care, love and dedication that has gone into her quilt just bursts out at you every time I look at it. It left more than a few family members with tears in their eyes when they saw it too. Charlotte smiles and loves to look at the squares. She will definitely be snuggled up underneath it tonight. I will post pictures of Charlotte with the quilt a bit later, but I just had to thank you all from the bottom of my heart â¤ here is the quilt being admired by all the family (hence all the feet you
can see!!) Once again thank you all - you simply do not know how much joy you bring into families lives with your incredible dedication and talent.
Although Charlotte was small when she was born, there was no immediate concern about her future. Then at about 5 months old, Charlotte was referred to a pediatrician as she wasn't meeting her milestones at all. I was told that she may have cerebral palsy or had had a stroke. But these tests came back negative. I was then told to expect one of three syndromes to be what Charlotte had. All blood tests came back negative for those too. Then I was told that Charlotte probably had Rett syndrome. There were no tests available back then, so it was all diagnosed on clinical observations. But once blood tests became available, Charlotte began testing negative for Rett syndrome.
Meanwhile, Charlottes health wasn't doing so well and she had a gastrostomy fitted and also major spinal surgery for a very severe scoliosis.
Charlotte then began to suffer from breathing problems and was given a ventilator for overnight. It was classed as life threatening if she didn't have her ventilator. Then this began to creep over into the daytime. I was given a choice to leave things as they were and Charlotte probably wouldn't see her 19th birthday or we could try a tracheostomy. I gave the go ahead for the tracheostomy and Charlotte had this fitted in 2014.
As far as we know, Charlotte is only one of two people with Pitt-Hopkins with a tracheostomy in the world and the only one in the UK. She is the most severely affected by her syndrome in the UK.
Charlotte cannot walk, talk, feed herself or eat orally very well without risk of choking. She is also visually impaired but has the most beautiful personality and smile in the world!!