Dreams of Everest for Eddie
Donation protected
Our goal is to provide Eddie with the best start in life, to give him the tools to overcome his diagnosis & give him a chance to climb any hurdle that life puts in his way! We believe that this funding will help to do just that & one day, if Eddie has the desire, he will be able to climb Everest!
Eddie came into the world on 16th April 2018, our perfect little IVF baby, born after a couple of years of ups and downs. Our little family quickly settled into our new life & Eddie regularly hit milestones! Then one day, around 4/5 months old, we noticed that Eddie was only using his right hand to grab toys, to push himself up, to grab his bottle. We also noticed that his right leg would lift and kick but his left didn't. After a series of GP appointments, we decided to fund a private appointment to see a Paediatric Consultant, Doctor Colin Bernstein, at the Spire Hospital in Manchester. He recommended an MRI scan & what followed was the diagnosis every parent dreads, Eddie was diagnosed with Left Sided Hemiplegia, a form of Spastic Cerebral Palsy, due to having a Stroke at some point during his young life - most likely whilst keeping warm inside mummy's tummy. Along with the diagnosis we were told he may never walk, & if he did, he would never walk like you and me. We were told he may never use his arm, & even if he did, not like you and me. We were told he may have speech problems, breathing problems, vision issues, epilepsy, & many other issues.
In the months that followed, we were referred back to the NHS who would support us with Physiotherapy & Occupational therapy. Until then, we paid for private Physio believing that the earlier we helped our son, the better the chance of his recovery. These sessions were hard work & extremely frustrating for Eddie as we were trying to make him do things he just didn't want or couldn't do.
Eddie is now 21 months old & doing so well! He has learned to walk, in his own little way, having skipped crawling altogether, but who needs to crawl when you can bum-shuffle! He has two different removable splints for his left hand, to help keep the ligaments/muscles from tightening up & to help keep his thumb and hand from forming a fist. He has just been given an ankle splint to help encourage him to walk heel down first instead of on the balls of his feet/toes & to keep his ankle at a right angle as it is weak & falls inwards. He will soon need a full leg splint to help him walk better, but he must wait until he is a bit older & stronger. He doesn't use his hand at all, but we keep pushing him to understand that he does have another hand. We put food in it, we build towers & encourage him to knock it down with his left side. We place toys on the side of the bath and he knocks them off with help. He can only eat with his right hand, drink with one hand - so he still uses a sippy cup. It’s now that we are finding the milestone hitting slowing down as he isn't developing physically as he should be. It’s devastating to think he may never have the use of his hand, arm and leg like we do, something we take that for granted every day.
Eddie is such a happy, friendly, chatty, warm little boy. Everyone who meets him is touched by him. So many people describe him as an 'Old Soul' & feel sure he’s been here before! He has been so strong throughout all the medical appointments, the physiotherapist constantly comments on how happy he is and how well he's doing. We both believe he will carry on surprising us & smashing barriers placed in front of him. He lets nothing faze him! He is such a determined character……he falls again & again, but with help he gets back up & tries again, constantly!
We first learned of Constraint Induced Movement Therapy (CIMT) when following a little girl on Instagram who has had the therapy for the same condition. CIMT is a therapy designed to create new pathways for the brains signals to get to the affected area of the body. This is done through constraint of the unaffected arm in order for the brain to find another way (forced use of the affected arm - eventually). The programme is 3/4 weeks long, 5 days a week of 3 hours of therapy a day. For Eddie this will involve his right hand/arm being in a full plaster cast 24/7 for 3-4 weeks to encourage the use of his left arm/hand. Once the programme is finished we will be provided with a removal cast so that we can carry on doing therapy at home and make it "normal" for Eddie to be using his left hand/arm daily. This will bring many challenges, especially when we are at home without the therapists….there will likely be lots of tantrums but we know it’s for his own good. Studies have shown that the treatment has positive improvements & significant progress is made. We feel this is the kick start that Eddie needs in order to give him best possible start in life. In order to give him the support he needs we need to learn from the therapists to be able to implement the therapy at home. One thing is clear, the earlier the intervention the better! Although Eddie knows no different, he will eventually and if we don't try and do something about it now he will have no use of it for the rest of his life - which means he will be limited as to what he can do and what he can achieve.
Unfortunately, CIMT is expensive & we cannot afford to do this alone. This is why we need your help & anything you can contribute to help our precious boy live his life to the max would be truly appreciated.
We still don't know what the future holds for Eddie and what other challenges and possible medical problems we have to come, but we are ready to take them on as a family - and we are very lucky to have the support of our amazing family & friends!
Eddie came into the world on 16th April 2018, our perfect little IVF baby, born after a couple of years of ups and downs. Our little family quickly settled into our new life & Eddie regularly hit milestones! Then one day, around 4/5 months old, we noticed that Eddie was only using his right hand to grab toys, to push himself up, to grab his bottle. We also noticed that his right leg would lift and kick but his left didn't. After a series of GP appointments, we decided to fund a private appointment to see a Paediatric Consultant, Doctor Colin Bernstein, at the Spire Hospital in Manchester. He recommended an MRI scan & what followed was the diagnosis every parent dreads, Eddie was diagnosed with Left Sided Hemiplegia, a form of Spastic Cerebral Palsy, due to having a Stroke at some point during his young life - most likely whilst keeping warm inside mummy's tummy. Along with the diagnosis we were told he may never walk, & if he did, he would never walk like you and me. We were told he may never use his arm, & even if he did, not like you and me. We were told he may have speech problems, breathing problems, vision issues, epilepsy, & many other issues.
In the months that followed, we were referred back to the NHS who would support us with Physiotherapy & Occupational therapy. Until then, we paid for private Physio believing that the earlier we helped our son, the better the chance of his recovery. These sessions were hard work & extremely frustrating for Eddie as we were trying to make him do things he just didn't want or couldn't do.
Eddie is now 21 months old & doing so well! He has learned to walk, in his own little way, having skipped crawling altogether, but who needs to crawl when you can bum-shuffle! He has two different removable splints for his left hand, to help keep the ligaments/muscles from tightening up & to help keep his thumb and hand from forming a fist. He has just been given an ankle splint to help encourage him to walk heel down first instead of on the balls of his feet/toes & to keep his ankle at a right angle as it is weak & falls inwards. He will soon need a full leg splint to help him walk better, but he must wait until he is a bit older & stronger. He doesn't use his hand at all, but we keep pushing him to understand that he does have another hand. We put food in it, we build towers & encourage him to knock it down with his left side. We place toys on the side of the bath and he knocks them off with help. He can only eat with his right hand, drink with one hand - so he still uses a sippy cup. It’s now that we are finding the milestone hitting slowing down as he isn't developing physically as he should be. It’s devastating to think he may never have the use of his hand, arm and leg like we do, something we take that for granted every day.
Eddie is such a happy, friendly, chatty, warm little boy. Everyone who meets him is touched by him. So many people describe him as an 'Old Soul' & feel sure he’s been here before! He has been so strong throughout all the medical appointments, the physiotherapist constantly comments on how happy he is and how well he's doing. We both believe he will carry on surprising us & smashing barriers placed in front of him. He lets nothing faze him! He is such a determined character……he falls again & again, but with help he gets back up & tries again, constantly!
We first learned of Constraint Induced Movement Therapy (CIMT) when following a little girl on Instagram who has had the therapy for the same condition. CIMT is a therapy designed to create new pathways for the brains signals to get to the affected area of the body. This is done through constraint of the unaffected arm in order for the brain to find another way (forced use of the affected arm - eventually). The programme is 3/4 weeks long, 5 days a week of 3 hours of therapy a day. For Eddie this will involve his right hand/arm being in a full plaster cast 24/7 for 3-4 weeks to encourage the use of his left arm/hand. Once the programme is finished we will be provided with a removal cast so that we can carry on doing therapy at home and make it "normal" for Eddie to be using his left hand/arm daily. This will bring many challenges, especially when we are at home without the therapists….there will likely be lots of tantrums but we know it’s for his own good. Studies have shown that the treatment has positive improvements & significant progress is made. We feel this is the kick start that Eddie needs in order to give him best possible start in life. In order to give him the support he needs we need to learn from the therapists to be able to implement the therapy at home. One thing is clear, the earlier the intervention the better! Although Eddie knows no different, he will eventually and if we don't try and do something about it now he will have no use of it for the rest of his life - which means he will be limited as to what he can do and what he can achieve.
Unfortunately, CIMT is expensive & we cannot afford to do this alone. This is why we need your help & anything you can contribute to help our precious boy live his life to the max would be truly appreciated.
We still don't know what the future holds for Eddie and what other challenges and possible medical problems we have to come, but we are ready to take them on as a family - and we are very lucky to have the support of our amazing family & friends!
Fundraising team: Eddie's Eagles (5)
Jenna Carroll
Organizer
Jenny Wootton
Beneficiary
Rebecca Grundy
Team member
Debra Carroll
Team member
Michelle Tilley
Team member
