EvieMaesStory

Hello, my name is Evie Mae I’m 4 years old. I was diagnosed with a rare neurological non-curable condition in 2018 Rett Syndrome.

 

The condition is very life-limiting and comes with many symptoms. I suffer from seizures which I have to take daily medication for! I have no use of my hands or legs I am unable to walk, talk, crawl or even sit unsupported, the condition also affects my spine I have to wear a full plaster upper body cast for 3 months at a time with only a weekend break this has to stay with me until I’m the age of 6 at least, this is to prevent my spine from curving further as this could affect my internal organs e.g. heart, lungs. I also have a tummy button where I’m also fed through, this is just to help me to try and maintain a safe weight as much as I love my food I can only eat blended foods, I’m on several medications along with the support of recovery medications for my seizures. 

A small list of my conditions that are linked to my diagnosis Rett Syndrome 

Epilepsy- seizures

Scoliosis- curvature of the spine

Sleep problems

Difficulty eating- gastrostomy

Bowel problems- constipation

Teeth grinding

Slow growth/ brain growth microcephaly

Loss of communication skills

Abnormal hand movements

Dystonia painful muscle spasms

Breathing problems during the night 

breath-holding

Autism 

Loss of motor skills

The condition goes undetected and untraceable during pregnancy, it affects mainly girls, one of their X chromosomes become dormant. I was healthy and passed all my health checks when been discharged from the hospital the signs and symptoms start to show between 6-18months I developed fine for the first 6 months of my life I was able to sit alone, learn how to hold toys and feed myself finger food’s then I regressed everything I had learned I am now unable to do. I may never regain any skills we all take for granted every day. I was invited to St Thomas hospital in London where I was able to meet a senior specialist who specialises in this particular condition and after tests and observation he put me on the higher end of the Rett Scale meaning my condition is one of the worst Rett diagnoses.

Along with all the above come some expensive costs for different equipment that I would require to have somewhat of a normal life that the NHS doesn’t supply which is why I’m here to tell you the story of my Grandad and my dad along with other family and friends

My grandad has run 4x 10ks a 5k and 2x 10miles to help raise money to go towards my specialist equipment that I will and currently require, My dad has also joined in on the running - Their next run is on November the 7th Middlesbrough 10k (due to Covid they missed out on a lot of runs) also training for these runs. My family are also trying to support me financially to help towards equipment. The main reason for the page is to be able to raise some money to put towards for a specialist car chair that's costing £3000 which we need to legally and safely transport Evie around to her appointment and other urgent journeys and daily commutes, also an Eyegaze around  £5000 which will allow me to communicate with my eyes, along with other pieces of equipment I will need as I grow older. 

Our goal is to raise funds to improve Evie's lifestyle and to raise awareness of Rett Syndrome.

We are both working parents (Jamielee part time as she is Evies full time cared) and try to save as much money as we can to help towards this equipment, Evie also has a sister Isla who is 3 and really does admire her and helps all she can. 

 

If you can help us raise some funds for my daughter's condition to help with very valuable equipment your donation will be really appreciated and will be adding to my daughter's smile and improving her life.

 

#HerFightIsMyFight - Dad 

#EviePutsTheRettInPretty - Mum