Urchin


A Personal story


When my beautiful, healthy daughter was just two and a half, her left eye started to 'wobble' slightly from side to side. This, through my persistence, was scanned and we learned that she had a brain tumour.

Following four hours of brain surgery, a week in hospital, and four months later, we feel we are beginning to get our daughter back. Our neurologist had to leave a quarter of the tumour in as this is forming part and parcel of her optic nerve and if it had all been taken away she'd have been left blind. She's already lost the sight in her left eye, and we have been told that if the tumour grows again she will need radiotherapy that will kill the tumour, but also the optic nerve.

Together, her dad and me have been through hell and we still are. Because of where the tumour is it is also affecting her pituitary gland which controls her hormones. We are now facing the possibility of our two-year-old going through puberty. As if she's not lost enough by losing one eye, she may now lose her childhood. She doesn't understand what is happening to her and it kills us both to see her go through this.

If anyone knows anything about optic nerve implants please let us know via feedback@forparentsbyparents.co.uk, so that we can try to preserve something so precious that we all take for granted.


Other Stories and Comments

When I went for my 20 weeks scan, the Dr's found that my babies heart wasn't beating properly,his bottom chambers didn't work. He was born 6 weeks early by emergency c-section, and went into complete heart block. At 2 day's old he had an open heart surgery to place an external pacemaker onto his tiny body to keep him alive. Then at 5 day's old went under surgery again to have a pacemaker put into his tummy, because he was to small to have it in his chest. He has had 4 operation's so far, and he his 3 and a half now. He is a normal healthy little boy with so much energy, but needs to have his pacemaker change ever 4-5 years. If you have a child with a heart condition or know of someone who does, I would love to offer my support and help.

Sherell


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