From Chloe’s birth we always noticed she tended to look towards her stronger side and her right hand was fisted. A private Neurologist diagnosed that Chloe has right sided hemiplegia when she was 8 months old. She told us from this point on you will know more about Chloe's condition than any Doctor and this has been very true. We joined HemiHelp immediately.
At one of the HemiHelp music workshops it appeared to others that Chloe was seemingly too shy to join in with the music making that the other children were very much enjoying. In fact she had severe epilepsy and was having fits throughout the day- which is why she wasn’t joining in. Chloe is not alone,studies have found that around 45% of children with hemiplegia also have epilepsy. After speaking to another family at a HemiHelp event whose daughter had similar epilepsy, we took a decision which would change our daughter’s – and our- lives forever. Just over two and a half years ago, aged 10, Chloe had a major brain operation called “hemispherectomy” which involved separating off part of her brain which causes the epilepsy.
The hemispherectomy operation has stopped her seizures so far. Chloe is now very confident, happy and mobile. Chloe enjoys special needs trampolining, horse riding, football, attending activity clubs and she is very sociable and makes friends very easily. Chloe goes to an amazing Special School. Every day we are seeing improvements to Chloe's alertness, attention span and learning ability. She received a certificate at school last week for attempting sums for the first time - up to this point she has been learning her numbers up to 20. I am so pleased she is at an amazing school and with the support and opportunities given by HemiHelp I am sure she will be able to go on to further education and enjoy employment - whatever she chooses to do!
Read more stories here
Millie is 10 and has left sided Hemiplegia, Scoliosis of the spine and has recently been diagnosed as Autistic. Millie has very complex needs, lots of hospital appointments and many anxiety issues. Every day is a challenge for Millie and us as a family.
Millie wakes up very early in the morning after having been up several times throughout the night worrying about the following day, and sometimes she is so anxious that she screams extensively. This is very challenging time for everyone in the family as we are already tired after being up through the night.
Millie needs help with washing, dressing and for her full body lycra splints and hand glove to be put on. Before putting on her leg splint on we do Physio which involve stretching exercises and give Millie medication to help with her aches & pains and muscle spasms. Millie needs the morning to go exactly according to a timed schedule, if the times are not adhered to and her routine is broken then we can have issues and she can go hysterical.
We go into school with her, help her to visualise the exact details of this school day, and Millie then seeks reassurance and confirmation about this from her teacher. Millie has to be taken out of school for hospital appointments.
Every night before Millie comes home from school her one to one helper goes through any worries she has had for that day or of any others for the following day. This is to try and address them as soon as possible.
Millie comes home feeling tired, she does her stretches and sits and rests and has her tea. Millie needs help showering before bed, washing, drying etc.19:30 lights out, this is not always the case if she is anxious about things.
This is a typical day for our family trying to help Millie the best we can and also to accommodate time for her brother Jack. Living with Hemiplegia and all the other issues associated with it isn’t easy.
We’re Sian and Matt, mum and dad to Ollie who is 3 and a half. We knew something was wrong with Ollie’s arm from an early age – he wasn’t using it and we didn’t know why. When we were given a formal diagnosis that Ollie has hemiplegia we left the consultant’s office asking: “Why Ollie?”
Without any idea what we were dealing with we tended to flip between negative and positive attitudes. The emotional rollercoaster was and remains pretty gruelling as we cannot be assured the extent to which Ollie will be affected as he grows.
Upon diagnosis we 'googled' hemiplegia and came across the HemiHelp website. The website is incredibly useful with lots of factual information as well as parents' notes and testimonials. We also were lucky enough to have a home visit from Hemihelp and we attended one of the annual Hemihelp family days where we met lots of parents who were in the same situation. We felt more empowered and reassured that there is a support network available to us should we need it.
Now, 2 and a half years since his diagnosis, Ollie is just our Ollie. He wears a splint ; he takes a bit longer to do certain things than his peers; he cannot run quite a fast as some of the other kids. However all of the children in his nursery class are different – they have strengths and weaknesses and Ollie is just another 3 year old. He has a 1 year old baby sister, Sophia who adores him and keeps pinching his books and toys. We have just made contact with another family with a son of a similar age who live nearby. This was only possible through the local Hemihelp contacts network. Our philosophy is to absolutely treat Ollie as a normal little boy - we are busy teaching him there is nothing he can't do in this world if he puts his mind to it. Hemiplegia only touches the aspects of your life that you let it touch.