When Tia was 15 months old, she went blind in her right eye due to a tumour called, optic nerve glioma growing on her optic nerve. This is a common symptom of NF1 and needs careful monitoring by MRI scans and regular eye tests with an opthamologist, to ensure the tumour doesn't grow into the other eye or into her brain.
At aged 9 unfortunately, another tumour grew on Tias left optic nerve, which she has 3 monthly eye checks and MRIs because as yet and very luckily, her left eye sight, has not been affected. The treatment if her eye sight does change, would be chemotherapy.
NF1 has also affected Tias right leg. She has had 3 operations in 7 years to correct a 7cm leg length discrepancy, which works for a short time and then the staples need to be replaced. Tia also has thousands of benign tumours in her right leg, buttocks and pelvis which has made her leg very enlarged. Unfortunately one of the tumours, also known as a plexiform fibroma or fibromatosis, turned malignant, a cancer called malignant peripheral nerve sheath tumour. This was removed in a 10cm mass from her right leg and buttocks in November 2014, at the Royal Othapedic Hospital in Stanmore, Middlesex.
Unfortunately, and as u can imagine, this was a very big blow to her family. The cancer has returned again, this time on her tibial nerve, just behind her right knee....because of this, on Wednesday July 8th 2015, Tia is having an above knee amputation. This is the only safe option to irradicate the cancer.
We are trying to raise funds for Tia, so that she can have a power assisted wheelchair which she will be able to self propel with ease, The NHS will not fund this and they cost roughly £5,000. We are also trying to raise money for a state of the art prosthesis when she is fully grown and money for anything she wants as a treat after her operation.. and this is where we step in.......Any donation big or small will help towards getting Tia the things that she needs. We are also holding a fun day at the Six in Hand Pub, Croesyceiliog on September 5th to raise any extra cash for Tia's fund.
We will keep you upto date on all fund raising activities as soon as everything is confirmed. Please support this beautiful, local girl...... and invite anyone you can to help get Tia her wheelchair and prosthetic leg. Thank you :)
Secondly, we had a phone call a few weeks back off a charity called Princes Gate Trust saying they would like to pay something towards Tia's wheelchair, yesterday Tias Nan had a phone call off them saying they are completely funding the wheelchair. Shocked is an understatement!! She told them that we have the money to pay ourselves but they inisisted and said they would like us to put all the money raised into an account for Tia, for when she is old enough and fully grown to have the prosthetic leg she wants. We are so very grateful for the Princes Gate Trust for their support!
We are still going to have the Fun Day for Tia at the Six In Hand pub, Croesyceiliog on Spetember 5th. This is to give Tia the best prosthetic she deserves, so please keep supporting us and thank you all again.
A special mention to Ieuan Bidgood who tweeted Tia's story to the Welsh Rugby team and Ryan Jones, one of the trustees of Princes Gate Trust, put the request into the board of directors who agreed to help with Tias power assisted wheelchair. Thank you Ieuan!
She's being fitted today for her power assisted wheelchair! Thank you to each and everyone of you that has donated otherwise we'd never have gotten it this soon for her.
We're still trying to reach our £10k target so the rest of the money can go towards a prosthetic leg.
Tia is doing well and still in high spirits. We've had a few people from the media contacting us wanted to do a story!!
Tia starts physio today to learn to walk with one leg and her crutches :)
She's called her stump 'Percy'... Click the link below to have a look at the funny video she's done :)
CAN WE AS A FAMILY THANK EVERY SINGLE ONE OF YOU WHO HAS DONATED PRIZES DONATED MONEY AND SHARED TIA'S FUNDAY PAGE, TIA IS RECOVERING REMARKABLY WELL, MUCH BETTER THAN WE EVERY EXPECTED, WE HAD A PHONE CALL A FEW WEEKS BACK OFF PRINCES GATE TRUST SAYING THEY WOULD PAY SOMETHING TOWARDS TIA'S WHEELCHAIR, YESTERDAY EVENING I HAD A PHONE CALL OFF THEM SAYING THEY ARE COMPLETELY FUNDING TIA'S WHEELCHAIR, SHOCKED IS AN UNDERSTATEMENT, I TOLD THEM WE HAVE ALL THE MONEY TO PAY OURSELVES BUT THEY INSISTED THEY PAY AND WANT US TO PUT ALL MONEY RAISED INTO A ACCOUNT FOR TIA FOR WHEN SHE IS OLD ENOUGH AND FULLY GROWN TO HAVE THE PROSTHETIC LEG SHE WANTS. WE ARE STILL GOING TO DO OUR FUNDAY AT THE SIX IN HAND TO GIVE TIA THE BEST PROSTHETIC LEG SHE DESERVES, SO PLEASE KEEP SUPPORTING US, AND THANKYOU ALL AGAIN, AND CAN I JUST MENTION IEAUN BIDGOOD WHO TWEETED THE WELSH RUGBY TEAM AND RYAN JONES ONE OF THE TRUSTEES OF PRINCES GATE TRUST PUT THE REQUEST INTO THE BOARD OF DIRECTORS WHO AGREED THEY WOULD FULLY FUND TIAS CHAIR, WE ARE TOTALLY OVERWHELMED,
So glad the target was raised for you to get your chair Hunny you've always been so brave with all you've been threw I hope all goes well for the op tomorrow keep being brave Tia you have an amazing family looking out for you all the best beautiful girl xxx
Hey ur so brave I suffer from NF 1. Also I have lumps n bumps I feel ppl stare at me in nib 2013 I got told I have optic nerve gilomA my right eye is going my left not too bad. I also have a mAss of tumours on bottom spine which is pressing on my bladder causing problems I have them all in breast all down chest back arms etc. I feel a. Freak I hate it. I will in end need wheel chair u are a inspiration I read ur story n thought blimey I moan n stress