Snowdrop. - Who are we and what do we do?

Our story begins 29 years ago with the birth of our own son, Daniel.  My wife's pregnancy had been described as being a "textbook pregnancy," but unfortunately it was not a textbook birth and Daniel had been delivered dead by emergency caesarean section having suffered severe oxygen starvation during labour.  It took the medical staff 20 minutes to resuscitate him and by the time they did, the brain injuries which he had sustained during a mismanaged labour had been compounded.  As they rushed him to the neonatal intensive care unit he was already suffering multiple seizures and we were later informed that his injuries were so severe that he was not expected to survive 24 hours.  An EEG then confirmed his brain activity as being a 'pre-terminal event.'  I remember every minute of those 48 hours as though they happened yesterday.  I remember a little baby boy who fought dearly to live.  As he did throughout his life, he fought everything, sometimes even beneficial things and so it was that every time they put a line into him, he ripped it out.  It was sheer determination that he survived those bleak hours and a neonatal medical and nursing team to whom I owe a great deal.

The next few days were very traumatic but Daniel did survive and eventually we were allowed to take him home.  We were told that he would be very unlikely to have escaped his ordeal without significant disability.  In fact he turned out to be blind, deaf and quadriplegic.  We were told that this was a situation which would never change, - a statement we refused to accept and we set out on a journey to find answers to his problems, - a journey which would take us all over the world.

Daniel hardly slept and this was gradually wearing Janet, my wife down to the ground.  We decided that she needed help and that if we were really going to solve Daniel's problems, that I should give up my career, so that I was available at home to take some of the strain. We also decided that I should enroll at university to study psychology and child development so that I was learning more and more about Daniel's problems.  The degree I enrolled on was full time, so at least we would be in receipt of a student grant, but it had the advantage that my lectures were so spaced out, that I could be at home much more than previously.

Somehow over the next 3 years, despite a profound lack of sleep, I managed to get a degree based in psychology and child development and this combined with other things we were doing meant that we had been able to bring back Daniel's sight and hearing, much to the initial shock of the medical profession, however this shock soon changed to the position, agreed amongst themselves that "it would have happened anyway."  Yes of course if we had done nothing, it would have happened anyway.

So, over the years we managed to give Daniel a good quality of life, using help from various therapies and our own increasing knowledge.  However, at age 13, Daniel suddenly developed an unsafe swallow.  This was a setback because his weight was always judged to be on the 'light side' and so the decision was made to insert a naso-gastric tube.  This did have the desired effect of him putting on weight, however another more sinister complication arose, - he started to display signs that he was entering puberty.  This obviously had the effect of releasing various hormones into his system and the poor little mite just could not cope.  He began to experience brainstem seizures which despite all their efforts his doctors were unable to control.  Then when he was 15 he suffered a brainstem stroke.  Over the next weeks he began to decline and a couple more of these episodes ensured that there would be no recovery.  On the morning of the 21st of December 2003, I saw his eyes close for the final time and at 4-40am we lost him.

As you may imagine, over the next few months, we were devastated, (in fact we still are, losing a child is something you never get over). We wanted nothing to do with the 'special needs world' we totally rejected it.  However, eventually I decided to finish my studies and returned to that world to supplement my degree with post graduate qualifications in 'language and communications impairments in children' and ultimately a degree based in neuroscience and child development.  In August 2008 Snowdrop was born.  We called it Snowdrop because on the morning of Daniel's passing, Janet went into the garden and saw the new life of the snowdrop bulbs just beginning to break through the soil.  We later discovered that the Snowdrop is an international symbol of hope through adversity, - a fitting metaphor.  Initially we had one child on our programme, but today we are bursting at the seams with hundreds of families using our programme from all over the world. We have children on our programme with a wide variety of developmental problems, ranging from 'specific language impairment, through to sever cerebral palsy, autism, ADHD, sensory processing disorder and much more.  We also treat a wide variety of sometimes rare genetic disorders.

Our success has outstripped my wildest dreams.  We have children seeing, hearing, feeling, walking, speaking and much more, who previously were unable to.  This is not just empty talk of success which cannot be substantiated, I can actually introduce you to the families whose children have been helped.   When I was an 18 year young laboratory technician starting out in the world, I never thought my life would take this turn.   If you want to learn more about us, simply visit our website at http://www.snowdrop.cc or you could visit our Facebook page or simply email us at info@snowdrop.cc

Snowdrop, - A Week of Developmental Assessments. Week Beginning 16th May 2016

We had three assessments this week, on Monday we saw a 5 year old little girl for her fourth assessment. She has 'Phelan McDermid' syndrome, which is basically where a chunk is taken from chromosome 22, - it is quite rare and can produce all sorts of problems, but commonly comes through with autism type issues. I was overjoyed today when for the first time she walked into the room, looked me straight in the eyes, flung her arms around me and gave me a cuddle. Other improvements were both hands working cooperatively for the first time, spontaneous interaction, - she was constantly trying to involve me in her play. It was also good to see her and her little sister 'tussling' over possession of a toy, - a very natural, normal scene. we have a little girl who is beginning to emerge out of her bubble, - we have 'chinks in the armour.' Now to prize them open!

On Tuesday we saw a 3 year old little girl who does not have a diagnosis. She does have severe neurodevelopmental problems however and she was returning with her mum and dad for their first reassessment and what a stunning difference there was. Visually she has moved from the 12 month level to the 24 month level, with similar surges forward in auditory development where she is understanding much more language. She even produced independent forward movement when I placed her on her tummy. In fact there were improvements in every area of development. Yes, she still has problems, but is she moving in the right direction, - definitely! She is a concealed intelligence, but I can see her! Well done to all!

 On Thursday we received a two year old little boy who has developmental delay, for his third assessment and my, how he is coming along. When he first started the Snowdrop programme 10 months ago, his vision which is affected by optic nerve dysplasia was at the 12 month level. Now however, he is much more visually 'switched on' and is operating at more like the 30 month level. His auditory abilities which were at the very basic levels of a 3 month old baby are now at the 24 month level where he is understanding simple sentences, listening to stories and understanding what some parts of his body are called. His tactile processing problems are much improved and we are just starting to work on developing a standing balance, where before, he wasn't even sitting. He has made huge gains in every area since we first met. He is a delightful little chap with a great family around him.

Another very satisfying week!

Snowdrop. - A Week of Developmental Assessments. Week beginning 9th May 2016

We began the week by seeing a 7 year old little boy with ADHD for his second assessment. Such an intelligent, gentle little boy caught up in a whirlwind of his own hyperactivity, but definitely calmer than his first assessment and his attention definitely easier to capture. Sometimes it can take time to slow hyperactive kids down, but I feel we are making progress.

On Tuesday we saw a 4 year old little girl who has PVL and developmental delay. Today was her 7th assessment and although she still has significant problems, she is streets ahead of that 1 year old I first saw who was locked away within herself. She is using her vision beautifully to explore her environment, understanding more language, making choices, crawling on all fours and we are not far away from standing. Like me though, she is totally motivated by food!

On Wednesday we welcomed a 4 year old little boy for his 9th assessment. He has a diagnosis of severe cerebral palsy and was forecast not to live. Yes he still has many problems, but he is absolutely streets ahead of where he would have been and is thriving. His visual and auditory cognition have risen to where they will soon be at the top of the developmental profile, - he can sit, can stand with support and his tactile processing issues are resolved, as is his inner anxiety. His muscle tone is much improved and we now have 3 words of speech, (with many more to come I think). There is a massive difference in his awareness of and engagement with his environment and the people in it. It has taken a while and a great deal of hard work, battling against epilepsy too, to achieve all this, - but look how far he has come in comparison to that initial prognosis, which was as bad as it can get!

On Thursday, we welcomed a 7 year old little girl back for her 3rd assessment. Her diagnosis is cerebral palsy and CVI. Today I watched her visually steering her hands, taking the top off a pen and replacing it with great precision, which is great because hand function is also a problem. Visually and auditorially she is now 'switched on' and has visual and auditory abilities at the top of the profile, is trying to get herself into the 4 point crawling position and has an expanding vocabulary of words. A super assessment with a highly intelligent little girl.

We finished the week by meeting a great new family with a 20 month old little boy who has no formal diagnosis but what the medical people feel looks like developmental delay / cerebral palsy. He is such a bright gregarious little chap, I could have stayed there all day with him. Again, a little one with huge things going for him despite his developmental problems. A lovely way to end the week.

Mowat Wilson Syndrome

Today I saw one of the most incredible transformations of a little boy. The little one in question has Mowat-Wilson syndrome,  Mowat-Wilson syndrome is a genetic condition that affects many parts of the body. Major signs of this disorder include distinctive facial features, intellectual disability, delayed development and intestinal disorder
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Mowat-Wilson syndrome is often associated with an unusually small head, (microcephaly), structural brain abnormalities, and intellectual disability ranging from moderate to severe. Speech is absent or severely impaired, and affected people may learn to speak only a few words. Children with Mowat-Wilson syndrome also have delayed development of motor skills such as sitting, standing, and walking.

We first saw the little chap in question 5 months ago when he was 15 months old, - he was not sitting, not crawling, not understanding any language, had poor hand function and was generally behind in every area of development. Today, after 5 months on the Snowdrop programme, I met a little boy transformed! He was visually and auditorially curious, understanding some language, sitting, crawling in a good cross pattern, trying to pull himself to stand and well on the way to developing a standing balance. His hand function was dramatically improved, to the point where he was using a pincer grip in both hands and trying to feed himself with a spoon. Dramatic gains in 6 out of 7 developmental areas, against the background of a genetic expression trying to prevent that! Not a bad start to the week and another little superstar is born!

Neonatal Alloimmune Thrombocytopenia

Today we saw a little boy who had neonatal alloimmune thrombocytopenia at birth which caused him to suffer brain haemorrhages. We first saw him 2 years ago and since he started the programme the progress in language development, hand function, social development and in his level of understanding has been phenomenal. He is also well on the way to developing a standing balance, which will be a step away from walking. He got a bit upset with me today, which upset me because I want children to come and have a good time. Such an intelligent little boy though, he will go far!  Just shws what is possible with effort and patience.

Autism and the Snowdrop Programme.

Today we met a lovely new family who have a 7 year old little boy with autism. He is a great little guy with a lot going for him. Reminds me of another little chap who used to be on programme named Leo, who some of you will remember seeing on video, (above). 

Leo was a mess of sensory processing problems, so much so that he could not come to see us for his first assessment, we had to conduct the assessment remotely.  By the time of his second assessment, we had made such inroads into his problems that he and his mum were able to travel to see us.  Ultimately, he did really well on the programme and his diagnosis of autism was withdrawn.  The little chap we saw today also has lots going for him. Looking forward to getting him started.

Development in the Face of Lissencephaly

Today we saw a 19 month old little boy who has been on the Snowdrop Programme for 5 months. He has Lissencephaly, (a genetic condition which essentially means that his cortex does not have the folds which are normally there, it is smooth). This was his 2nd assessment and there were some nice improvements to see in vision, tactile perception, hand function and reciprocal communication. Again, this proves that even in the face of altered genetic expression, we can still stimulate development.