History of Tree of Hope
Evening Post photos_0005
This is our lovely little boy Adam who is just 6 years old
At only 3 weeks old Adam started having seizures and stopped breathing, he was rushed to hospital placed on seizure medication and antibiotics (they thought Adam had meningitis). We were told he had a virus and was kept in a High Dependency Unit in our local hospital for a week still and kept on seizure medication for a little while.
From then on we realised Adam was slipping behind all of his milestones but we did not know why. He was slow to crawl and very late walking, we were told he might never walk because of his apparent low muscle tone which made me just work harder with Adam to prove the medical profession wrong. Adam was then diagnosed with deafness and prescribed hearing aids.
At 2 ½ years old the seizures came back and Adam regressed. He lost the few words he had mastered and did not wish to interact with anyone, slowly withdrawing from us all. Eye contact was lost and some really challenging behaviours emerged. Adam had no way to communicate except by yelping and screaming to get attention. This was our lowest point we wanted to help Adam but he saw everything we did as a demand and it sent him into a frenzy. We hardly ever left the house.
At 3 years old we approached an Autism consultant and Adam was diagnosed with secondary Autism? We needed this diagnosis to secure a home education program and using a behavioural analyst we trained a team of 4 therapists to teach Adam to communicate, (we use special augmentative devices), based on Adams motivation to request items he loves and rewarding him. We worked on Adams physiotherapy and occupational therapy targets at home and introduced swimming and horse riding.
All was going well until Adams sleep needs increased and increased, he was needing 18 to 20 hours sleep per day. We kept being told it was due to Adams low muscle tone as moving about required much more energy. We kept data and wrote to every Dr who had ever treated Adam. He stopped eating and after much nagging was taken into hospital for tests…, we were told ‘don’t worry we can always put a tube in to feed Adam if it should get worse’ ...We persevered and turned this around by pairing up eating with something Adam loved (TV) and eventually he started to drink goats milk and then got the strength to eat a little more and a little more each day (Eating to date is great but it has been a long struggle). But Adam still needed huge amounts of sleep.
A sleep study was at last performed and from this we got a referral to Great Ormond Street were Adam has been diagnosed with Central sleep Apnoea, he stops breathing during sleep and his brain doesn’t kick in to tell him to breath again. His oxygen saturations go as low as 51% He has also just had a 24 hour EEG and they have found that Adam has clinical and sub-clinical seizures throughout his sleep. During one of the seizures Adam stopped breathing so they will be doing a combined sleep study and EEG very soon to investigate how often this occurs.
At Christmas time we received a diagnosis at last, it came out of the blue and was a huge shock. Adam has a very rare Chromosome disorder. It is called Idic 15 but is rare in the fact that Adam has four extra copies instead of two and that it is in a mosaic form meaning it is not in every cell (which is why it took so long to diagnose). Adam is the 7th child in the world to be diagnosed with this disorder.
Looking now at this diagnosis it covers every one of Adams symptoms (We have included a leaflet on the disorder). What is most worrying is that there have been cases of sudden death with this disorder possibly linked to seizure activity and sleep apnoea which we know Adam has.
We have attached the physicians advisory about sudden death in children like Adam (this really makes us try to pack as much into Adams life as possible and give him the best chances to enjoy as many experiences as we can)
So whilst we are waiting for the Doctors to get their act together we decided to embark on The Scotson Therapy at the Advance Centre in East Grinstead. We learn exercises to increase the blood flow around Adams diaphragm thus encouraging the oxygenation of the undeveloped muscles that support Adams diaphragm. He also has Hyperbaric Oxygen therapy each time we go and the difference is amazing. Adam is so much calmer, his posture is better, he is learning and making decisions, he is developing a cheeky sense of humour and his energy levels are increasing and so is his enjoyment of life. We visit 3 times a year when the exercises are changed according to Adams progress. However we have now run out of funding. Because we run a home program and only part of it is covered by our Local Education Authority we are already subsidising this with our own money. Steve, my husband, is self employed and works away but has had to stay home a lot because of hospital appointments for Adam, (and myself as I sadly have a chronic illness). This is hitting us hard and we just don’t know how we are going to raise the funds to attend the Advance Scotson Centre again in a couple of months. We are ebaying like crazy, we would love to do a fundraiser but looking after Adams needs takes up all our energy along with running a home program and all the admin it involves. It would be so easy to have sent Adam to school but they could not do what we have achieved to date and I feel that Adam would not be where he is today if we had taken the easy option. Adam is a joy and everybody who meets Adam falls in love with him. He still has severe learning difficulties and his progress might be slow but it is forward moving and we are so very proud of him. He is trying to babble again, (we have introduced a Talk Tools program after seeing an American Speech therapist), and we work on facial muscles, lip closure, chewing, developing his back bite in order to eat solid food by using special exercises.
We would love support and help to keep all our therapies going but mainly the Scotson therapy which costs us £700 for the training and hyperbaric oxygen therapy and roughly £500 for accommodation whilst we are there (can vary depending on season).
Ideally it is our dream to purchase a hyperbaric Oxygen chamber of our own so that Adam can have extra oxygen under pressure everyday but our lottery numbers haven’t come up yet to give us the £25K needed but we can dream …..
Georgina and Steve Bancroft
Evening Post photos_0005
This is our lovely little boy Adam who is just 6 years old
At only 3 weeks old Adam started having seizures and stopped breathing, he was rushed to hospital placed on seizure medication and antibiotics (they thought Adam had meningitis). We were told he had a virus and was kept in a High Dependency Unit in our local hospital for a week still and kept on seizure medication for a little while.
From then on we realised Adam was slipping behind all of his milestones but we did not know why. He was slow to crawl and very late walking, we were told he might never walk because of his apparent low muscle tone which made me just work harder with Adam to prove the medical profession wrong. Adam was then diagnosed with deafness and prescribed hearing aids.
At 2 ½ years old the seizures came back and Adam regressed. He lost the few words he had mastered and did not wish to interact with anyone, slowly withdrawing from us all. Eye contact was lost and some really challenging behaviours emerged. Adam had no way to communicate except by yelping and screaming to get attention. This was our lowest point we wanted to help Adam but he saw everything we did as a demand and it sent him into a frenzy. We hardly ever left the house.
At 3 years old we approached an Autism consultant and Adam was diagnosed with secondary Autism? We needed this diagnosis to secure a home education program and using a behavioural analyst we trained a team of 4 therapists to teach Adam to communicate, (we use special augmentative devices), based on Adams motivation to request items he loves and rewarding him. We worked on Adams physiotherapy and occupational therapy targets at home and introduced swimming and horse riding.
All was going well until Adams sleep needs increased and increased, he was needing 18 to 20 hours sleep per day. We kept being told it was due to Adams low muscle tone as moving about required much more energy. We kept data and wrote to every Dr who had ever treated Adam. He stopped eating and after much nagging was taken into hospital for tests…, we were told ‘don’t worry we can always put a tube in to feed Adam if it should get worse’ ...We persevered and turned this around by pairing up eating with something Adam loved (TV) and eventually he started to drink goats milk and then got the strength to eat a little more and a little more each day (Eating to date is great but it has been a long struggle). But Adam still needed huge amounts of sleep.
A sleep study was at last performed and from this we got a referral to Great Ormond Street were Adam has been diagnosed with Central sleep Apnoea, he stops breathing during sleep and his brain doesn’t kick in to tell him to breath again. His oxygen saturations go as low as 51% He has also just had a 24 hour EEG and they have found that Adam has clinical and sub-clinical seizures throughout his sleep. During one of the seizures Adam stopped breathing so they will be doing a combined sleep study and EEG very soon to investigate how often this occurs.
At Christmas time we received a diagnosis at last, it came out of the blue and was a huge shock. Adam has a very rare Chromosome disorder. It is called Idic 15 but is rare in the fact that Adam has four extra copies instead of two and that it is in a mosaic form meaning it is not in every cell (which is why it took so long to diagnose). Adam is the 7th child in the world to be diagnosed with this disorder.
Looking now at this diagnosis it covers every one of Adams symptoms (We have included a leaflet on the disorder). What is most worrying is that there have been cases of sudden death with this disorder possibly linked to seizure activity and sleep apnoea which we know Adam has.
We have attached the physicians advisory about sudden death in children like Adam (this really makes us try to pack as much into Adams life as possible and give him the best chances to enjoy as many experiences as we can)
So whilst we are waiting for the Doctors to get their act together we decided to embark on The Scotson Therapy at the Advance Centre in East Grinstead. We learn exercises to increase the blood flow around Adams diaphragm thus encouraging the oxygenation of the undeveloped muscles that support Adams diaphragm. He also has Hyperbaric Oxygen therapy each time we go and the difference is amazing. Adam is so much calmer, his posture is better, he is learning and making decisions, he is developing a cheeky sense of humour and his energy levels are increasing and so is his enjoyment of life. We visit 3 times a year when the exercises are changed according to Adams progress. However we have now run out of funding. Because we run a home program and only part of it is covered by our Local Education Authority we are already subsidising this with our own money. Steve, my husband, is self employed and works away but has had to stay home a lot because of hospital appointments for Adam, (and myself as I sadly have a chronic illness). This is hitting us hard and we just don’t know how we are going to raise the funds to attend the Advance Scotson Centre again in a couple of months. We are ebaying like crazy, we would love to do a fundraiser but looking after Adams needs takes up all our energy along with running a home program and all the admin it involves. It would be so easy to have sent Adam to school but they could not do what we have achieved to date and I feel that Adam would not be where he is today if we had taken the easy option. Adam is a joy and everybody who meets Adam falls in love with him. He still has severe learning difficulties and his progress might be slow but it is forward moving and we are so very proud of him. He is trying to babble again, (we have introduced a Talk Tools program after seeing an American Speech therapist), and we work on facial muscles, lip closure, chewing, developing his back bite in order to eat solid food by using special exercises.
We would love support and help to keep all our therapies going but mainly the Scotson therapy which costs us £700 for the training and hyperbaric oxygen therapy and roughly £500 for accommodation whilst we are there (can vary depending on season).
Ideally it is our dream to purchase a hyperbaric Oxygen chamber of our own so that Adam can have extra oxygen under pressure everyday but our lottery numbers haven’t come up yet to give us the £25K needed but we can dream …..
Georgina and Steve Bancroft