Neurofibromatosis Type 1
‘For Holly living with NF1 is completely normal because she knows no different, she loves everything any other 8 year old girls loves, she may be sore and stiff in the morning but she still gets up ready for the thrill of that day even on one of her harder days she smiles and finds a way to adapt the task at hand to suit her.
For Holly’s future? That is a question I can’t answer because we don’t know how long a future is for her. I of course want everything for her the same as any parent would, happiness, marriage, a family, good friends but I just don’t know if she will even be here to have that so I try to live in the here and now and enjoy what we have now with her our little tinkerbell.
Quote from dad: living with Holly is “Aaaaarrrrrgggghhhh” on the bad days and the good days, she is 8 years old going on 18 and drives me crazy but I love her just as she is!
Clare’s Princess all good J
Neurofibromatosis 1 (Nf1) which affects Holly occurs in around 1:3000 births, it is characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumours may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF1 also have learning disabilities. Holly has a rare variant of the condition called Single Cell Deletion.
In a number of the images Holly’s wheelchair and splints are shown in the background as she only requires them now and again and would rather not use them.