Paul ... Our Inspirational Child
Facts About Neurofibromatosis:
-
It is caused by a mutation to one gene, so can be inherited or due to spontaneous gene mutation.
-
It can co-exist with various other health, behavioural or learning problems.
Signs and symptoms
Light brown spots on the skin ("cafe-au-lait" spots)
A tumor on the optic nerve or growth on the iris of the eye
A larger than normal head circumference
Abnormal development of the spine, skull or bones
I met Paul for the first time in summer 2013, and what an amazing boy he was! The most loving and caring child, he wanted lots of cuddles and to get stuck in helping us with the gardening we were doing. He was so happy and independent, which shocked me because Paul had large tumour growths on his face. I asked around some of the staff about Paul’s age and his facial condition, but no one seemed to know anything, they told me he was between the ages of 8 and 11! They also said that Paul used to be able to see, but he had recently lost his vision because the tumours completely cover his eyes.
I only spent a couple of days in the Children’s Home, but it touched my heart and I knew that I would be going back to help Paul and to support the children with special needs living there, I so desperately wanted to make a difference to their lives.
My reunion with Paul after the whole year was incredible, I was greeted by the most amazing cuddles and Paul gave me a tour of the home and introduced me to all of his friends!
During my stay at the children's home, I also spent a lot of time with Paul in the sensory room that I created. After several weeks of working with Paul it seemed clear to me that Paul had no intellectual or cognitive impairments, but that his development had been prevented due to a lack of stimulation and input. Paul was not at school and spent a lot of his day in his own world, often wandering around the building where he lives. This is so sad and frustrating, because in the sensory room Paul really thrived, he learnt many games, activities and songs and was great at helping some of the less able children learn and participate. Paul’s ability never failed to amaze me, he learnt how to play games which relied on vision despite him being blind and absolutely loves to show off his newly learnt abilities.
Medical Information
My first job was to take Paul to the hospital for a CT scan to learn more about his condition and see what medical aid there was available for him. He was so excited to be going in the car; as cars, motorbikes and aeroplanes are his favourite things and he is always listening out for them.
Paul received a diagnosis of neurofibromatosis, type 1. We were informed that there is very little knowledge on this in Ghana and there is no way he would ever be able to get the medical care that he needed there. Paul would need an operation to try and remove the tumours and reconstruct his face, but for this he would have to go to Europe or America to see a specialist!
On my return back to England I was worried that I would not be able to help this amazing little boy, there were so many barriers. But I knew that I was determined to do everything in my power to make his life better.
Timeline of events:
-
September, 2014 – I started researching neurofibromatosis, emailing anyone I could find who was a specialist or had knowledge in the field and my mission began.
-
I built up many contacts and increased my knowledge of NF. So many amazing people wanted to help this project.
-
December 2014 – I was put into contact with an organisation called ReSurge Africa, who had opened up a burns and facial reconstruction unit at Komfo Anokye Teaching Hospital, in Kumasi.
-
January 2015 – Paul began seeing the two main surgeons there, having various observations and tests.
-
June 3rd, 2015 – Paul was admitted to hospital
-
Friday, June 5th – Paul was taken for surgery. The operation was a progressive debaulking surgery, which means that they surgically remove parts of Paul’s tumours. However, due to the location of Paul’s tumours and because they are plexiform tumours (meaning that they wrap around the nerves) the surgery can only be done a small bit at a time. Paul’s first surgical procedure lasted for 8 hours, during which time there were 18 different Doctors and Surgeons on standby. They started by debaulking from around his eyes and chin and the surgery went well.
Paul adored his stay in the hospital with constant attention from two nurses who I employed to care for Paul 24/7 and all his favourite toys that I sent over to play with.
With increased stimulation and engagement he thrived and his independence developed quickly.
Unfortunately, due to Paul currently going through puberty with many growth hormones his tumours have grown back quite quickly. Therefore, we need to work on a more long term plan for Paul’s medical care, personal care, development and education.
In 2015, an incredible couple from America named Scott and Jane came to visit Paul in Ghana. They were touched with his story over the Helping Paul blog and really wanted to get involved. In January 2016, together we moved Paul to a school which is specialised for the deaf and blind. He boards there termly and there is a well-trained and kind staff team there who are working with Paul to help him settle in, giving core education in his English speaking ability, learning to read and write through braille, and to walk with a white cane. His progress since being there has been incredible and it really shows how with education and the right support Paul can Thrive. We continue to work hard on future plans for Paul, which are extremely exciting. So keep an eye out as there will be updates coming on this soon!
Plans for Paul
