Ella, the Light Behind RRF's Special-Needs Work

Hello Rosie Rainbow Fund supporters,

I’m Helene Czornyj, Trustee from the start of the charity and very good friend of Rosie’s Mummy, Carolyn.

I’ve never written a blog before but I wanted to share a little of the life with my beautiful disabled daughter Ella who had many wonderful experiences and equipment provided by Rosie’s Rainbow Fund over the years. Before Rosie became ill, she had helped Ella by co-writing and producing a musical with her sister and friends called ‘Forever And A Day’ to raise funds for special equipment Ella needed. This was the beginning of Rosie’s Rainbow Fund’s extensive work with special needs children in schools, centres and hospitals. One of Ella’s favourite experiences was being massaged by Amanda Tibbels (Rosie’s Rainbow Fund’s Therapeutic Aromatherapy Massage Therapist) as she loved being pampered (just like any little girl does!).

Ella enjoys a music therapy session with former Rosie's Rainbow Fund Music Therapist Ceridwen Rees

Ella was born in 1999 with the rare condition Rett Syndrome, a severely disabling neurological disorder, which meant she couldn’t walk, talk or do anything for herself, and needed constant care. Ella was a very beautiful little girl and had a very expressive face full of smiles and was loved by all.

Ella had many years of struggling with the added trauma of pneumonia and epilepsy and had frequent long stays in hospital, relentlessly ill, with her family constantly by her side--but somehow she would always come home! Ella became known by her family and friends as the ’Come Back Queen!’ She would often deteriorate very suddenly and then after hitting a critical low would somehow have the strength to hold on before making a full recovery. We had come to expect the unexpected from Ella as part of the roller coaster emotional journey we were on.

Ella comes from a very musical family and we all shared many treasured memories of taking her to many shows and concerts, which she enjoyed. She always loved being around everyone as long as she was the centre of attention!

She attended Heritage House Special Needs School, Chesham and became known as the pink princess of her class as she was always beautifully dressed in pink (her favourite colour) with matching hair accessories.

Ella had big sparkling blue eyes that spoke volumes to us all; from the exciting expressions on her face after having music therapy to the totally switching-off face during something she didn’t like doing!

She loved spending time with her big brothers Christian and Ashley, who totally spoiled her, and would let her watch her favourite Tweenies sing-along and play with her. They were very caring, protective brothers.

Sadly, in July 2008 Ella became very ill again with pneumonia and passed away peacefully at the age of just 9 years old in Wycombe hospital, surrounded by her family and friends.

At her funeral Rosie’s Aunty Sam had written a poem which was read out and I think sums up Ella perfectly:

"Ella’s Eyes" by Sam Keston

We will never, ever know why

Some are born to stay

Others to fly,

To fly.

Dear Ella

You are given wings

You taught me many many things

Your turn to play

No more no-words

No voice to say goodbye. "Goodbye".

You taught us plenty

Showed us how to read you

I always believed

You knew exactly what was happening

And spoke by looking

With your big sharp knowing "Ella’s eyes".

You were no-one’s fool.

I believe you are soaring out there

Running free

High and happy as can be

You are granted wings, and time to fly.

Dear Ella

You are free

To be the girl you need to be.

Forgive us,

As we ask the question, Why.

6th July 2008 for Ella with love