Hello, I’m Rachel, I have a 16 month old daughter called Imelda with a rare chromosome disorder, so rare is doesn’t have a name. In fact Imelda is unique. Many databases have been searched and there is no one else like her. This makes it especially difficult for the consultants treating Imelda as they say no research is held about her condition, unlike many well known chromosome disorders, it is unknown… We are often told will have to wait to see how her condition develops when she gets a bit older.
We do know some of the ways it affects her, these include a movement disorder (dyskinesia), decreased muscle tone (hypotonia), kidney problems, development delay and progressive infantile scoliosis as well as audio and visual impairments. She is currently in a plaster jacket for her scoliosis and uses a special chair.
The unknown is very worrying and stressful for us as parents. Our coping strategy is to help Imelda reach her full potential with therapy. It can be difficult to stay calm all of the time about the unknown, so its always best to do something positive! She sees many therapists including physiotherapist, occupational, speech and language. She says Dadda and has nearly learnt to roll over, we are very proud of her! It proves the therapy IS working! Imelda’s favourite therapy was getting into a hydrotherapy pool but now she is in a full non removable plaster cast jacket it is now impossible. This is such a shame as it was a real benefit to her and she loved the water. Imelda is expected to stay in a series of plaster jackets for at least 2 more years. Each plaster change is approx. 2-3 months and only sees a few days break in-between and requires a general anaesthetic because of the traction applied.
She also sees many teams of consultants, Neuro disability, Spinal & Orthopaedic, Urology, Audiology and Ophthalmology, Paediatricians and Early support workers to name but a few.
The garden is impractical. The uneven grass is not suitable for the wheelchair and the path is too narrow, nor can we get Imelda out in the garden from the house safely as we have a large step. She really loves the outdoors too, Imelda is now very heavy to lift and difficult to hold in plaster!
She loves to be sociable but unfortunately is very susceptible to chest infections so it makes it difficult for Imelda to join in with her friends at indoor venues. An accessible garden would be somewhere her little friends could come round to, to see her and play safely. She would truly benefit from an accessible, sensory space with raised flower beds so she could get her hands dirty and be at a good height to see the movement of the flowers in the breeze. She would also benefit from some shade in the garden due to her rare condition called Entropion, this makes her eyes much more sensitive to light.
As a full time carer we would never be able to afford the time or money to make these changes ourselves. She spends so much time at Great Ormand Street Hospital and therapy centres this would be a real haven for her to enjoy and help towards her development, life changing to our family and somewhere we could all enjoy together.
Hello everyone, I’m Imelda,
Our garden is very small, only 11 metre’s long and it would be perfect for me if I could get around it. Small is good! I’m small too and that was why I couldn’t be born naturally. My mummy damaged her back but still gets on with making me happy! She often says if I’m happy and smiling, then she is! When I was first born they couldn’t work out why I was so small. I had dislocated hips a squashed foot and failed 3 hearing tests but they sent us home. It wasn’t until 3 days later I was admitted back as I wasn’t feeding, it was then many tests where carried out and they found out I was unique. I think it is easy for people to look at me and think I don’t look unwell, many people even say I look like a doll! After a week of drinking lots of milk I was allowed back home. Then I was referred to a special hospital, Great Ormond Street. We go there lots! Thank goodness they like seeing me and blow me bubbles and play when I go to see them as I often have to cancel seeing my little friends. My hospital and therapy appointments are around 3 a week, more sometimes when I’m really poorly or have a block of therapy. Mummy says we have had over 200 appointments and 6 stays in hospital. She also says it’s very lucky we live within 2 hours of Great Ormond Street as the spine consultant says my condition is one of the most complex he has ever seen… Thank goodness I’m in the right place as if we lived anywhere else in the country, we would still have to come and see the doctor at Great Ormond Street! We use a car, a train and a taxi to get there.
I would really love a garden to relax in and help me with my development. A garden I can use for a half an hour here and there in-between going to appointments, it would make all the difference to me. Mummy and Daddy would never get the chance to do it themselves as they work and fight tirelessly to get me the best care and treatment. Mummy and Daddy work so hard that they are working with Great Ormond Street designing a special plaster jacket cast especially for me! Mummy and Daddy say I’m a trailblazer and will help other children one day. I love the rustling noises and movement that Bamboo makes and Daddy say’s thats good as there is no way we can have a big tree in such a small garden! He also wants to pull down the rotting shed before it falls down and create me a shady place or den to play so my eyes don’t hurt. I love swings and mummy alway’s goes on with me as I can’t sit up but I know she enjoys the swings as much as I do! I love touching and watching plants and flowers, it would be my dream come true to reach them. I don’t like being carried for very long as my back is very sore and muscle spasms can be painful but in my chair I am much more comfortable but can’t reach all those lovely flowers! I’d love to get my hands dirty and water the plants, I love water so much but am not allowed in it apart from my hands and feet. I’m also not allowed in the sand pits as if it gets in my cast it would make my skin very sore. I would truly love a garden that is for me. I know this would make my mummy and daddy happy too.
Mummy says we have been waiting over a year for someone to come out and say we need a ramp. Mummy and daddy battle so hard for everything I have, it will be nice for them not to battle so hard just to get me outside and enjoy the outdoors.
Marie-Louise Dudley 3 months ago
Sending my love.
Frances Duffell 3 months ago
Claire 3 months ago
I hope you win!
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