MORE HEARTACHE FOR DEVOTED PARENTS WITH TWO BRAVE LITTLE BOYS

LITTLE Sam McCausland who was recently diagnosed as suffering from a rare and severe form of Muscular Dystrophy is a fighter who faced his first battle for life a few days after his birth.

Just 72 hours after entering the world Sam was found to be suffering from Meningitis.

He pulled through and his overjoyed parents Tracy and William were eventually able to bring him home to Hillsborough.

However, at that time they were very concerned about Sam's older brother Callum.

Tracy explained he was hypotonic (very low muscle tone) from birth, blind for the first few months of life and a very quiet baby.

"He never babbled or played like other babies, and he was very slow to achieve motor milestones. For example he didn't sit until he was 11 months, never crawled or bottom-shuffled and didn't walk until he was almost two years old," she continued.

"I was convinced that Callum was suffering from a condition called 'Dyspraxia'. This, at its most basic level, is a problem in the brain-muscle communication. Callum may know what he wants his body, hands or fingers to do, but his brain has a difficulty with motor-planning - converting the thought into action - so he appears very clumsy and difficult.

"At that time I found out I was pregnant with Sam, and as muscular dystrophy had been a discussion skirted around on numerous occasions by Callum's specialists I requested that a muscle biopsy be carried out to ensure that he did not have the condition as I knew that it would be very likely to affect a second child.

"Callum's tests proved negative and I heaved a sigh of relief. I did more and more research into dyspraxia as I firmly believed that this was also the explanation for Callum's lack of verbal communication.

"I insisted that Callum be referred to the Nuffield Speech Centre in London as they have dealt with many children with verbal and oral dyspraxia."

Callum was subsequently diagnosed as suffering from acute oral dyspraxia and suspected severe verbal dyspraxia.

"This means that Callum's problems with communication are even more complex – not only does he have a problem in translating thoughts into words he is also, due to severely low muscle tone, unable to physically make the sounds he needs in order to formulate words," said Tracy.

He has since also been diagnosed with Dysarthria - poor jaw and tongue control - and sensory processing disorder which means he experiences problems with the way in which his brain interprets the physical world around him."

Eventually Tracy found out about a therapy called PROMPT (Prompts for restructuring Oral Muscular Phonetic Targets) developed for children with severe oro-motor dyspraxia.

"I then came across the Kendall Speech and Language Centre in South Miami and got in touch with their director, Wendy Nottoli," said Tracy.

"As we spoke over the following weeks I began to get really excited about what they were doing – they take a very holistic, integrated approach to therapy, and have a team of therapists who not only provide PROMPT, but also occupational therapy, sensory integration therapy, advanced oro-motor work, and many other therapies that I had been trying to source for Callum.

"William and I talked about it constantly and decided that we would take Callum to Miami for Easter in order to have some evaluations carried out with a view to having them work intensively with Callum for six weeks during the summer holidays."

However, just as there seemed to be some hope of progress for Callum the family's world came crashing round about them as Sam was diagnosed with Muscular Dystrophy.

Tracy said when she received the news she fell to the floor and howled like an animal.

However, after absorbing the initial shock she and William resolved to do as much as possible to fund research into the disease by setting up Struggle Against Muscular Dystrophy.

They also set up their website www.pleasefixsam.com and spoke to as many researchers and experts as possible.

Attention then shifted back to Callum as they travelled to Miami: "From the moment we set foot in the door we knew that we had found the right place for Callum," Tracy continued.

"As we watched the therapists interact with him it felt as though a veil was slowly being lifted to reveal the possibilities and the potential that our little boy might have.

"Callum was so excited. Their enthusiasm rubbed off on him, his eyes took on light, and his interaction with us began to improve a little. This convinced us that we were doing the right thing – the summer therapy was going to be a big investment of time, energy and money, but we felt that there was no question that this was what we had to do."

The family returned from Miami and the focus was again on Sam and trying to get a more definitive diagnosis for his condition.

The couple took their younger son to the Newcastle Centre for Life and tests carried out there confirmed he was suffering from the extremely rare Congenital Merosin Deficient MD which has so few sufferers funding for research into a cure has all but dried up.

Tracy and William hope their charity will be able to supply much needed finance: "The pleasefixsam campaign is now more important than ever, and I feel almost a sense of panic that we need to raise this money now," said Tracy.

We are still working towards our target of raising half a million pounds - that will enable us to help start research into this form of MD. We will have to keep on with the fundraising as time goes on - as it is quite likely that SAM will be the only source of funding for this research.

"There may eventually be hope in such developments as stem cell research which promises to help many different medical conditions. Without hope we have nothing. We cannot and will not give up."

In the meantime the couple have decided to remain in Florida to allow Callum to take advantage of the treatment on offer.

" I have no idea what Callum's potential really is – I don't know if he will ever be able to communicate – but I know in my heart that he stands a much better chance of achieving that potential if he gets to stay here and benefit from this intensive input for the next year," said Tracy.

"I will be here with the boys most of the time on our own - William will come out when he can, and I am hoping that family and friends will also visit. People here have been very kind and have really helped us get settled.

"We are now waiting for the US immigration to give us official permission to stay here for the year - we came over on the normal visa waiver and now have to apply for what is known as 'humanitarian parole' - ie that they will allow us to stay here because it is in callum's best interests - so we have had to get medical records etc sent over to enable an attorney to get a case together to present to them.

"We are financially, emotionally and every other way stretching ourselves to the limit to try to give him this chance."

You can keep abreast of events organised by Struggle Against Muscular Dystrophy at www.pleasefixsam.com

Further information on the condition can be found at www.muscular-dystrophy.org

If you need information on Dyspraxia go to www.dyspraxiafoundation.org.uk