|
To hear more about Gulshat's story in the news, click on the links below:
 |
Youngster needs £35k spine op - Oxford Mail, 1st Oct 2009 |
|
|
Hip op girl to dance in panto - Oxford Mail front page, 6th Dec 2008> |
|
|
What a year" - Oxford Mail review of the year, 30th Dec 2006 |
|
Great strides to a better life - Oxford Mail front page, 27th Nov 2006 |
|
The lasting legacies of your help - Oxford Mail editorial comment, 27th Nov 2006 |
|
Gulshat takes her first steps - Oxford Mail, 22nd Apr 2006 |
|
The little girl's smile says it all - Oxford Mail, 11th Mar 2006 |
|
Readers hit fundraising target - Oxford Mail, 11th Mar 2006 |
 |
Gulshat's progress - 4pm news bulletin - BBC Radio Oxford, 9th Mar 2006 |
|
Gulshat hip op set for today - Oxford Mail, 7th Mar 2006 |
|
Turkmenistan girl gets surgery - BBC News, 6th Mar 2006 |
|
2nd Interview with Anne Diamond - BBC Radio Oxford, 6th Mar 2006 |
|
Choir to raise funds for hip operation - Oxford Mail, 25th Feb 2006 |
|
Op cash appeal to help girl, 6 - Oxford Mail, 21st Feb 2006 |
|
Explorer backs girl's op appeal - Oxford Mail, 13th Feb 2006 |
|
1st Interview with Anne Diamond - BBC Radio Oxford, 7th Feb 2006 |
|
Mother sells possessions for op - BBC News, 6th Feb 2006 |
|
Big step to a new life - Oxford Mail, 4th Feb 2006 |
Since her hip operation, Gulshat has been
enjoying dance classes.
Gulshat took her first
post-op step on 13th April 2006. Gulshat and Bahar are very
grateful for the kindess and expertise
of the doctors at the NOC and would like to let everyone know that the
hip operation was successful.
Turkmenistan is a beautiful desert country lying on the ancient silk route
in Central Asia.
Aged three in a waist-down cast, Gulshat had still not taken her first
step. (Photo taken in 2003.)
Brave 9 year old Gulshat from Turkmenistan was born without proper hip sockets. After trying to find the needed specialists in her own country and in Russia, a specialist at the Nuffield Orthopaedic Centre in Oxford generously agreed to perform Gulshat's surgery so that she could walk.
Thanks to many generous donations, the full cost of a corrective hip operation was met in 2006, and Gulshat has now successfully recovered. She jumped for the first time in her life a few months after her hip operation - one of her dreams come true!
However, her story is not over yet.
Gulshat also has pronounced curvature of the spine (scoliosis), which will result in breathing difficulties and crushed inner organs if uncorrected.
|
|
Once again good news from Gulshat's spinal consultant. Her brace is holding her spinal curve well, and there is no deterioration. We are delighted! She is currently having a new brace fitted - this one with pretty flowers and bugs printed on, so the old one with the butterflies will probably find a new home on one of her teddies...
We are still looking at her having an operation in 3-4 years time, and will change her brace to keep up with her growth spurts. She is also due a follow-up appointment soon for her hips as she is still struggling with climbing stairs and walking long distances.
Would you consider also helping towards covering costs for Gulshat's spine operation? The costs involved are predicted to be approximately £35,000.
| Click on the button on the left to give online via Paypal (will open in a new window). You don't need to have a PayPal account yourself to do this. Please email info@gulshatfund.org.uk if you would like further information, or if you experience any problems with your donation. |
The employees of Roberts Pianos in Oxford have kindly agreed to help us with collecting donations. If you would like to contribute to the Lily Gulshat Fund but would prefer not to use the online giving option, please ring them on 01865 240634 or pop into the shop: 87 St. Clements Street, Oxford, OX4 1AR
UK taxpayers are eligible to claim repayment of tax under the Gift Aid scheme. Please email info@gulshatfund.org.uk if you would like to request a Gift Aid form.
Gulshat had what is known as dysplasia of the hips, which meant that her hips were not completely formed. In layman's trerms, this means that she was born without any hip sockets. She also has pronounced curvature of the spine (scoliosis), which will result in breathing difficulties and crushed inner organs if uncorrected.
Gulshat comes from Turkmenistan, a desert country in Central Asia. After trying to find the needed specialists in her own country and in Russia, a specialist at the NOC Oxford generously agreed to perform Gulshat's hip surgery so that she could walk. Gulshat arrived in the UK with her mother on the 24th of January 2006 to prepare for surgery, and had her hip operation on the 7th of March 2006.
The spinal consultant was once again delighted at Gulshat's progress at her latest check up. Against all the odds, it seems that the brace is both holding her spinal curve and providing some correction. Let's hope we continue to see this sort of improvement.
Gulshat will always need to wear a brace 24 hours a day, but without the worry and anxiety of an imminent operation. The frequent check ups she has with the orthotist means that he is able to adjust the brace to her growing body and immediately make changes if there is any soreness or rubbing.
Gulshat and her Mother have been granted longer term visas which should now last for the duration of her treatment. This is fantastic news as it has also taken the pressure off providing funding for frequent trips back to Turkmenistan to renew the visas.
Gulshat is growing rapidly and is already onto her second spinal brace. This one has pink butterflies on it!
After her first brace (fitted around a year ago) did such a good job of preventing the curve in her spine from worsening, this second brace was designed to provide the same support while also attempting to correct the curve a little. This was something no one ever expected to be possible, but Gulshat's most recent x-rays showed results which even the spinal consultant couldn't quite believe at first. Gulshat's spine has not merely maintained its previous level of curvature, but has actually improved slightly since her previous x-ray six months ago.
Gulshat and her mother Bahar are delighted. Although Gulshat will still need a spine operation, it means that for the time being she can continue with this more conservative method of treatment which allows her body to grow as much as possible before the operation takes place.
Gulshat has been wearing her brace for over 6 months now. The last time she had a spine x-ray, it showed that her scoliosis had increased from 45 to 52 degrees. However, there is good news too - Gulshat went back to the consultant a few weeks ago, and her scoliosis had not increased any further. This is really important, as it means that the brace she's been wearing is working.
The consultant and the orthotist are now hoping to try the more conservative method of bracing for longer, in the hope that if the braces keep working, she may not need a spine operation for a few years. She is growing really quickly now though, and has nearly outgrown the brace! She will be fitted for a new one soon, and a different type of brace as well. When children are growing rapidly, hey can need a new brace every 3-4 months, and we have been advised that Gulshat and her mother stay in the UK for longer to receive the treatment she needs.
Gulshat is still improving with her walking and running a year on after her hip operation. She has been dancing to help strengthen her leg muscles, and was in the end of year dance show. Her teachers have been very supportive and talk about the tremendous progress she has made.
Now that Gulshat doesn't need a wheelchair, zimmer frame or push-chair to get around, some friends of hers decided to give her and her mother a treat by taking them to the seaside for a day. Neither had seen the sea before and Gulshat made a huge sandcastle big enough to sit on (with a little help from a friend!).
We are trying to organise some more fundraising events - watch this space! If you would like to contribute towards Gulshat's ongoing costs for treatment, please do get in contact (see below).
Many thanks to the CMF Oxon Choir and supporters, and to all who contributed towards the Christmas craft fair in December 2006. These events raised over £600 towards Gulshat's spinal treatment.
A second operation is necessary to correct Gulshat's spine. A spine specialist at the Nuffield Orthopaedic Centre (NOC) has confirmed that this too is operable while she is still young. He has predicted that without surgery, the effects of the curvature will begin to crush her internal organs and make it difficult for her to breathe.
Gulshat is already being fitted with a custom-made brace in Oxford which she will wear 24 hours a day to hold the 45 degree spinal curve until she has the operation. The operation will also take place at the NOC in Oxford.
A specialist has kindly given his time for free to make the brace, and friends in Oxford are looking after Gulshat and her mother.
On 13th April Gulshat took her first post-operation steps! She has a child-size lime green Zimmer frame which she is supposed to use for about a month. She is also undergoing physiotherapy - both on land and in the water. Gulshat giggled with delight during the entirety of her first hydrotherapy session.
Both the surgeon and the physical therapist are very pleased with Gulshat's progress. New x-rays show sockets where she had none before! That the surgeon was able to do this all with Gulshat's own bone is amazing. Already it is hard to tell where the wedge of bone was inserted on each side, which means the bone is healing together nicely.
We also met with the spine surgeon about Gulshat's scoliosis. He said that if it was his daughter, he would use corsets for several years to try and keep the curve in her spine from worsening, and then between the ages of 8-12 he would operate to fuse four or five of her vertebrae together. Operating now would certainly have an impact on her growth and on her lungs.
We are still deciding what to do and when - and all the implications of this decision regarding Gulshat's spine. In the meantime, she is becoming stronger every day and enjoying being on her feet. We have much to be thankful for!
Thanks to you, we have now reached our first fundraising target £15,000 for Gulshat's hip operation - see our totaliser page!
We have not yet received a costing for her spine operation (the need for which only became apparent after she had been examined in Oxford) but current estimates place this at £20,000 - £25,000. The final cost of both operations is therefore predicted to be in excess of £35,000. We will post an update when the final figure comes through from the NOC.
Will you also consider helping? Every little bit helps, and with the support of people like yourselves, Gulshat will be able gain full use of her legs and be like other children her age.
Gulshat's operation on the morning of Tuesday 7th March went very well. By evening, Gulshat was out of recovery and back on the main ward, smiling and playing with toys on her bed but still feeling weak and nauseous.
The procedure was not as complicated as it could have been, and she will not need to be in a plaster cast while she recovers. This is great news, as she could have needed one for any time from three weeks to six months. She will, however, need to be non-weight-bearing for about a month, which means she will be in a wheelchair for several weeks.