This is Isla, she is 6 years old and one of our beautiful nieces.

Isla was born on 1st May 2011 despite aspirating on meconium during birth and becoming very poorly very quickly she pulled through. Doctors then discovered Isla had 3 holes in her heart (maybe 4 - bad aunties!). Isla proved to be a tough little cookie, recovering and growing to be a fit, active, clever, funny , caring little girl the same as all of her friends. She was monitored for her heart condition for a long time and has luckily never required surgery. The visits to hospital reduced to yearly & she has since been discharged,which is fab. Her little body is doing all the work now to heal. Both her and her family have been brave throughout. This was the beginning of her Journey.

On the 12th August 2017 Isla was admitted to hospital due to suddenly losing all feeling and use of her legs and suffering great pain. She was later diagnosed with Longitudinal Transverse Myelitis TM (https://tinyurl.com/ka6v9q9).Which causes inflammation of her spinal cord. It has affected her lower limbs and she can not feel anything from the chest down. In the last few weeks Isla has required MRI scans, lumbar punctures, anaesthetics and blood tests and received high dose steroids and plasma exchange treatment. The next treatment plans are still being discussed across the globe with all the specialists that know about this rare condition. She has remained an absolute shining star throughout all of this and has been frightened at times but so so brave & very funny. Despite the treatment so far, Isla has not yet gained any movement or feeling in her lower limbs. Each diagnosis of TM is unique and the level of recovery can vary. It is still early days and only time will tell what function she will regain.We are all remaining positive that Isla is a strong little girl and things will turn out ok.

The words you never imagine having to write about one of your babies;

"Some of you will already know but our Isla became seriously unwell on saturday and was admitted to the LRI. She has since been diagnosed with a very rare condition called longitudinal transverse myelitis. It has affected her lower limbs and can not feel anything from the chest down.

At first she was in a great deal of pain and discomfort but this is now under control and subsided and most of the time she is happy and chirpy.

She will now have to put in some hard work with the therapy team and all though we do not know what the future holds for her and our little family we are remaining positive. It could take week and months or even longer to get better but together we will make it....." Brave words posted by Mummy 17.8.17

We have made this page and shared Isla's story as we do not know what the future holds at this point in time. We do know that Isla will require more treatment and will have a long road to rehabilitation. She is currently in charge of a wheelchair which could be her means of mobilisation for sometime. Her mummy and daddy are with her all the time (taking turns to be at home/hospital with big bro and keep things as 'normal' as possible. They would normally be at work...they are all bonkers and are 'never normal'). We would all want her to remain as independent throughout and maintain her dignity and loving persona.

However, there may be a time when funding is required to aid Isla's recovery & to come home safely and comfortably, or for equipment that is required to make life the best it can be in the future. We would like to know that should money be required, there is a fund to help support Isla and her family to make things a little easier ( adaptations or equipment cost a lot). Funds may be there for a special family experience whilst adapting to a new life. Mummy or Daddy is likely to need to stay with Isla, at least initially, which will impact on their ability to both continue to work- which they will discuss and work together to manage as they are an amazing team. We would love them to have some reassurance that money is here should they require it so financially things are not delayed.

If you are able to spare any amount you can to help support Isla in her recovery & future we know that she would be forever Smiling from all of your kindness. Setting a limit is difficult as we do not yet know what she will need so the sky's the limit really and any amount will be better than nothing at all. Once again THANK YOU all.

UPDATED 19.10.17 I have had permission to share and update this page. Since Isla had spinal surgery, a few weeks ago now, we have received devastating news that the tumour they removed was in fact a very rare and aggressive form. We all hope from the bottom of our hearts that this will be the end however due to the rareness of the tumour the doctors just do not know. Isla will be commencing 6 weeks of radiotherapy in November along with chemotherapy. The doctors have now informed us it is not TM as initially thought and the tumour was the cause of the paralysis. We are making the most of every day with this amazingly strong little lady. We are so proud to be her aunties (uncles, grandparents, cousins, friends....). Sadly there has yet to be any changes in Isla's feeling from the chest down but she is now a pro using her wheelchair and seems stronger everyday. We have been able to bring her home (local hospital rather than Birmingham for now) for a short period of time prior to the treatment starting again in Birmingham. Mummy, Daddy and Big Bro continue to be an inspiration as does Isla and we continue to fund raise for whatever we require. It has been and is really tough right now, but we have to remain positive and enjoy lots of fun times

If situations change or funds are not accepted by Isla's family anything raised or bought can be donated to the charity of their choice. We can assure you any money donated would be used correctly and for the benefit of Isla Smiler.

UPDATE 3.1.18

Hello everyone & happy New Year to you all, Isla has returned home today following a rather traumatic time over the Christmas period following a Urine infection and Chest infection. The chest infection had a huge effect on Isla resulting in her having great difficulty breathing and maintaining her oxygen saturations. This resulted in her being transferred to HDU and lots of intensive, scary conversations were to follow. Putting both Isla and her amazing family in a very scary place for the best part of Christmas.

She did however have enough strength to open some of her presents on Christmas morning and saw santa.She required a special machine to support her breathing during this time as she was too weak to do this herself. This allowed her more time to recover and despite having a very tough time she has now recovered and went home today (3.1.18). She has a long road of treatment ahead of her and is due to commence Chemotherapy this month, if she is well enough, which going on her super powers we hope she will be.

I think we all may have to repeat Christmas too. Isla will also start having physio, the house will start to be adapted to meet some of her needs and things will start to fall into place again. She has been given extra support at home to aid her breathing should any nasty bugs sneak in again. She will have a respiratory review in a few months to follow her up.

We now aim to build her up and make her as string as she can be. Things will be tough but we have been given more time with this little Princess which is all we could wish for. Thanks again to everyone for the ongoing support.

sadly due to her being so poorly she missed out on some very special trips that had been bought for her and her family. However the venues have been great and offered vouchers etc to arrange new dates wherever possible (De Montfort Hall Leicester and Lap land UK naming a couple).

She is a little whizz in that wheelchair too.

Thank you for the message Little Mix - she saw this as she became a little better over christmas and it REALLY made her smile.

THANK YOU also to the NHS who we have required so much in the last few years. We all work for the NHS in various areas and do not particularly enjoy being on the other side. Big up to all the staff!