A special love for little sister
Evie How’s little sister Elsie truly is one in a million.
Four-year-old Elsie has the extremely rare genetic condition trichothiodystrophy (TTD), which affects just one in a million people.
TTD affects many parts of the body and can cause delayed development, intellectual disability, and recurrent infections.
Yet, for 10-year-old Evie, her little sister’s disability doesn’t define her.
To Evie, Elsie is her best friend – an inspirational little girl whose achievements, however small, are a cause for pride and celebration.
Elsie was born four weeks early, weighing just 4lbs 30z.
It wasn’t until Elsie was not hitting her developmental milestones that parents Michelle and Colin became concerned.
Around two years ago, Elsie was diagnosed with TTD. And Michelle and Colin were shocked to discover that they are both carriers.
“I suppose we were quite fortunate in getting a quick diagnosis. It can take up to a year,”explained Michelle, of Halfway.
“We felt we now knew what we were dealing with. TTD affects sight, hearing and movement and in the brain, part of the white matter is not developed.”
But from a very young age, big sister Evie showed a strong interest in understanding her young sibling’s condition and demonstrated patience and determination when encouraging her to progress and master new skills.
At the age of four, Elsie is only now starting to crawl. And despite only having a few words, Elsie is very aware and alert.
“Although she has delayed development, a lot of children like Elsie cannot do the things she does,” continued Michelle, 39, who describes her younger daughter as‘a people person’.
“She has a great team of physios and occupational therapists who work hard with her to get her to sit up on her own, unaided. And she does get a lot of help at Westburn Nursery.”
The family knows of only two other children in the UK who have TTD, one of whom they have met at conferences organised by a support group.
Helping with Elsie’s care comes naturally to Evie, a pupil at Hallside Primary and an enthusiastic member of Shhh School of Dance.
“When she had a nose tube, I helped with that and at night, you had to clear it out,”explained Evie, who is mature beyond her years.
“I help to bath Elsie and wash her hair, and I help to change her after her bath. I play with her and help her to get up on to the sofa. I’ve also taught her how to get off the sofa safely without falling.
“I do drawing and colour cards with her and at weekends, I do more with her because I have more time. I make her laugh. If I am practising a dance, she’ll laugh and I have to do it over and over because she just shouts,‘again!’”
Elsie waits at the door when it’s time for her big sister to come home from school and her face lights up with excitement at the sight of her.
In nominating her daughter for the Young Carers award, mum Michelle told the Reformer: “Evie is a wonderful big sister to Elsie, who has a rare genetic condition. She fully understands and supports her needs. Many times her plans unexpectedly change and she takes it in her stride, especially this year when Elsie had surgery on Evie’s 10th birthday.
“Evie teaches Elsie skills that we are not brave enough to do. She helps around the house and at bathtime. But most of all, she makes her laugh. There is an age difference and the sibling rivalry that you normally get isn’t there. But they do really love each other.
“What amazes us most is how knowledgeable and respectful Evie is to those who need extra help. She has been able to use her own experience to educate others. Like her sister, she truly is one in a million.”