Renae’s Rainbow Fund

UPDATE!!

I’m writing this update on behalf of Ellie Smart

Unfortunately yesterday we received some devastating news. Renae’s brain stem is too thin and not sending the correct messages to her body. This is what controls the central nervous system and helps with balance, heart rate, breathing, blood pressure and swallowing. This is something that cannot be treated and all we can do is make her comfortable and support her airways for as long as we can. We cannot answer questions of how long our princess has left on earth as this is all dependent on Renae’s brain and how quickly she deteriorates.

We have had a few more awake periods over the last couple of days however she isn’t playing much anymore and we can see her changing daily. But we have had a couple of smiles and that’s what we live for!

We are still requesting a transfer for Birmingham Childrens hospital or GOSH and private consultations as the neurologists at Leicester are not communicating or working in Renae’s best interests. At a time like this Ellie needs to be supported the best she can and always informed and respected.

Please respect Ellie and her family’s privacy at this very hard time, she is receiving lots of messages and will respond when the time is right. We will continue to make updates as we know so many of you are worried about Renae

The family have been so strong and will continue to do anything to support Renae and give her the best quality of life she can. Their strength and commitment inspire me every day.

Thank you to every single person who has donated and shared we have already reached our initial target of £2000! You are all amazing and so supportive ❤️

Due to the news I’m at going to continue to keep the page open and continue to raise money to give Renae the best experiences she can and to continue to support the family with costs

Hey everyone!

I am creating this go fund me for our special little Renae who has Cornelia de Lange syndrome and her mum Ellie.

As most of you know Renae has had a really hard few years being in and out of hospital for so many different reasons. Unfortunately we are at a standstill and we need more answers.

Last year Renae started getting spasms in her legs and these have progressively got a lot worse and she has lost her quality of life as she is in so much pain. The past two weeks Renae has been in and out of consciousness and her oxygen levels dropping.

This is so terrifying for any parent to see this. This is why we are reaching out for help. Renae needs to be seen by a private neurologist, this has a starting price of £500 just for one consultation, she will then needs further tests and appointments. Ellie will also need to travel to London and being a single mum times are tough.

If anyone can donate no matter how little or share we would be so grateful and hopefully get Renae back to her happy smiling self. Thank you! ❤️❤️