SAMUEL'S STORY
Samuel was born on 11th July 2000, and for the first 3 years of his life was a active healthy little boy who presented no cause for concern, until around Christmas 2003 when everything changed:
Samuel was always so strong through adversity. He was diagnosed aged 3 with his Optic Glioma, brain tumour which over a matter of months caused him to lose his vision. He had lost his vision completely and was registered blind prior to commencing formal education in Sept 2004.
Samuel underwent 3 separate yearly courses of chemotherapy with the objective of preventing the tumour progressing. In 2007 it was necessary for him to have 4 neurosurgical operations in 3 weeks, immediately after which in true Samuel style he agreed to return to the hospital to be a case study at the Intercollegiate Neurosurgical Examinations for England, Scotland and Ireland designed to examine and qualify registrar neurosurgeons to become consultants. Samuel was so clued up on all his medical history along with the ability to remember the correct terminology that he had to be reminded not to over assist the candidates.
Samuel was so resilient with all his health issues. He coped with incredible bravery, maturity, and humour that humbled us all. This was all the more amazing for the fact he underwent 6 weeks radiotherapy and nineteen neurosurgical operations in 2008 alone, and a total of thirty five major operations in his 5 years of ill-health. This is a lot for any person to endure, however through his outstanding courage we never saw him demoralised or be anything other than positive. He was inspirational and tremendously thoughtful to other patients and their parents whilst in hospital, trying to reassure and comfort them before, during and after any operations and procedures, reacting to any individuals on the ward that may have been upset.
We have great respect and gratitude for all the medical support that Samuel received, and for the outstanding efforts of many individuals which include those on the Paediatric Oncology and Neurosurgical Teams at Southampton Hospital, and the Oncology Team and Community Nurses at Poole Hospital. We would pay specific thanks to paediatric neurosurgeon Owen Sparrow, paediatric oncologist Gary Nicolin and paediatric consultant Martin Hussey with whom Samuel formed close bonds of mutual respect and friendship.
The medical world learned a lot from Samuel in his ability to cope so well through adversity and for the rare and unusual health issues he presented them with over the years. He never made it easy for the medics which appealed to Samuel’s dry sense of humour. Samuel’s infectious personality had the ability to break through any professional detachment from patients that the medics may have wished to maintain. He always asked their first names, told jokes, competed with them on mental maths tests, and often taught and tested them on Korean numbers. He asked profound medical questions for his age, often when you thought he had been asleep, and he was generally accurate in his self diagnosis.
Samuel achieved so much in his lifetime. Academically he was a very bright boy and he excelled in mainstream school. He achieved so much through friendship, humour and determination, or do I mean stubbornness.
He loved going to Lilliput First School supported by a wonderful Head Teacher Julie Jeans and all her staff. He has had special relationships with his one-one teaching assistants, latterly Di Whitelegg, and Elizabeth Mcauley from Hearing and Visual Support Service who have been a phenomenal support both to Samuel and in recent months to us all as a family.
He became proficient at reading and writing braille and could touch type on a QWERTY keyboard. He played a very active part as a student within the school. He became involved with the school in arranging Shades Day each year in an effort to raise money for Guide Dogs for the Blind, and with his acute sense of smell assisted in setting up the school herb garden.
His ability with Braille also helped effect changes at Poole Hospital. He attended meetings and made recommendations with regards to signage, and braille or audible food menus that has been taken forward by the hospital.
He formed many wonderful friendships with children at school, who viewed Samuel as a special friend, he just happened to be blind. I know from speaking to parents of these children the positive impact that Samuel had on other children through his academic ability and his caring good natured character.
Samuel was very well supported by Baden Powell and St Peters School with his move there in September last year. He was very excited about Middle School and thoroughly enjoyed the time he spent there.
Samuel returned to Lilliput School in November last year as ex student and celebrity to open new play equipment. Samuel whilst at the school had always requested a slide as play apparatus due to his love of any form of slide. Samuels return was to officially open new play apparatus at the school which was a wooden pirate ship inclusive of slide. The pirate ship which Samuel was so pleased to open was very kindly named “The Jolly Samuel”.
Outside of school Samuel undertook a variety of activities. They included horse riding, swimming, cycling, playing the Keyboard and Tae Kwon Do. He also relished going to theme parks to ride on rollercoaster’s much to the anguish of Jacquie if she had to endure the rides.
Samuel enjoyed horse riding for a period of time, remembered all the horse names and took part in the grooming. He always managed to stay on the horse which was a huge relief to us.
Samuel enjoyed swimming and adored water slides. He was only 4yrs old when he could swim 350m by listening to our voices and the occasional instruction so that he did not bang into the wall. He always loved his group swimming lessons. We remember a humorous incident in one lesson when after swimming half a length and sitting at the poolside Samuel tapped the person alongside as he often did to ascertain and ask who was beside him. The boy alongside asked why he tapped his leg and Samuel replied “because I can’t see” The boy who had been in the same swimming group for a year looked at Samuel and said “You’re joking” Samuel then chuckled and said “No I’m blind”. I’m not critical of the boy this is just a humorous example of how well Samuel got on with life. There were many occasions that people had no idea that he had no vision.
His love of water slides was undeterred by his lack of vision. I remember being at a Disney water park when Samuel appeared out of a slide called rudder judder pointing in the wrong direction. This is bad enough for a sighted person but as a blind person could be slightly disconcerting; however Samuel shook himself off and was ready for the next slide. If we ever stayed in a hotel Samuels only requirements were that it must have a swimming pool with a water slide. This love of water slides helped establish Center Parcs as his favourite place to visit.
We were introduced to Center Parcs courtesy of Poole and District Children’s Cancer Fund which amongst its good work sends patients and families for weekend breaks.
Included as one of Samuels many qualities were his communication skills. He was articulate beyond his age and had the ability to converse with anyone. He would spend a lot of time on the telephone or he would often be busy brailling letters.
Samuel received his first offer of employment aged six courtesy of Center Parcs after brailling a letter to them with some interesting questions, including whether any of the parcs had a new water slide; whether they could have more comfortable mattresses, and whether they could build one nearby in the New Forest. They took the trouble to send a very nice braille reply with good answers and an offer of employment for when he was older.
Center Parcs was also a place that required Samuel to play an active part in cycling which he enjoyed. He would ride on his Tag-a-long bike but he never cheated, he always pedalled and worked hard rather than sit and take the easy option. Samuel never took the easy option in anything he did.
A skill we cherished was his ability to play the electronic keyboard. He had such fun, and through lessons, learnt, played and remembered 58 songs. His memory for so many things was phenomenal. He loved to volunteer and play the keyboard at Lilliput School as children entered the hall for assembly.
He wasn’t at all shy in his musical aspirations we remember a lovely holiday to Lapland in 2007. On a coach trip they asked children if they would like to sing any carols. Samuel volunteered and dominated the microphone at the front of the coach giving a great performance of all the Christmas songs he had learnt at school.
Samuel was involved with many wonderful charities’ one of which was Actionnaires the children’s activity wing of Action for the Blind. The group meets weekly for visually impaired children and their siblings to participate in different sporting activities. We remember the sheer joy in Samuels’ voice when he touched the top of the climbing wall, his excitement, and laughter playing a variety of other games in the hall. He enjoyed the group and would remind us and laugh how Danny one of the coordinators always referred to Samuel as “a legend” How right he was!
One of Samuels’ biggest achievements was through his participation in Tae Kwon Do which gave him a great personal joy and sense of achievement. He would not have been in a position to develop and learn Tae Kwon Do had it not been for the tremendous skills of his Instructor Gordon Fearn. Gordon has been a top competitor at World, European and National Level for many years, but as we all know great ability to participate in anything does not necessarily convert into the ability to teach that same activity. Gordon excels in both and had the drive and willingness to adapt to the needs of Samuel. Samuel had a mixture of one-one and group lessons that enabled him to develop his gradings to yellow belt. He also had the confidence to participate in a competition, and the uncanny ability to remember the Korean language involved.
At the group lessons one young friend Lauren was particularly helpful with Samuel and has kindly said that it was working with Samuel that has encouraged her towards teaching tae kwon-do.
Tae Kwon Do has 5 tenets that we think are excellent and would stand any person in great stead through life.
They are:- Courtesy; Integrity; Perseverance; Self Control; Indomitable spirit, we always felt that these tenets depicted Samuels approach to life.
When Samuel was at home from hospital, just weeks before the end of his battle, we had a wonderful moment when Gordon Fearn presented Samuel with an honorary 1st degree black belt, and Gordon's personal Gold Medal from the English Championships a week earlier! The black belt has been officially approved through Tae Kwon Do International and Tae Kwon Do Association of Great Britain. It was wonderful for Samuel who was so proud to receive it. We will cherish that moment and the wonderful certificates and letters that came with the award.
A letter from an 8th Dan Master was worded:-
"The TAGB Committee have heard of your many visits to hospital and how brave you have been.
When all the TAGB fighters and TAGB Masters were asked what they would like to be ie: would they like to be the best fighter the highest kicker or the fastest puncher. They all said no, they wished they were as brave as Samuel.
Because of this it has been decided that you will be awarded a black belt for your bravery and indomitable spirit."
As parents we are so proud of Samuel and his award and of his laughter when he realised that as a black belt he should be referred to as “Sir”!
Another great influence on Samuel, and encouragement to us as parents, was the appearance in his life of Californian, Daniel Kish.
We met Daniel in 2007 when we heard him speak of his own blindness, and his use of echolocation to achieve truly independent mobility without the need to learn routes or have a Guide Dog present. We were impressed with his skills and the possibilities for Samuel, and a memorable comment he made relating to the fact that every time a sighted person takes a blind persons hand you are potentially taking away their learning as they have no requirement then to explore or understand their environment, and his concept of “no limits”. Daniel met Samuel and they quickly struck up a bond. Samuel began to develop his echolocation skills and was included in a wonderful documentary in 2008 about dolphins, echolocation and how it can apply to humans. It helped to promote echolocation for the visually impaired.
An animal that has been an important part of Samuel’s and his brother Nick's life has been Keira our chocolate Labrador. Both boys adore Kiera and when Samuel was in hospital she gave him great focus and a major topic of conversation, and he loved being in her presence at home.
In conclusion, Samuel was a wonderful boy who, unphased by his own adversity, delighted all around him (whether friend or stranger) with cheerful voice, continual chatter, amazing sense of humour, sound of laughter, and thoughtful caring nature - whilst in hospital he learned that his Aunty's mother was ill. Without another thought for his own predicament, he demanded the use of a mobile phone in order to call his Aunty to enquire after her mother's health and offer his good wishes.
Extraordinary though Samuel's story may appear, he displayed qualities which exist in so many children in similar circumstances, if only they could be released. Our appeal seeks to support those organisations which can play such and important role in providing the support and environment which can foster these qualities in both the children and their families.
The 'link' below will take you to more detailed elements of Samuel's story which the families of children with cancer may relate to.
