After undertaking a corporate give back last year I wanted to do something this year that would benefit a very worthy cause. I think what follows more than fits that bill.

I know a lovely couple and Elle was hugely excited when she told us she was pregnant in 2016. She followed the 'rule book' to the letter in preparing for the birth.

Max was born on 27 August 2016 and she and Wilmer were overjoyed. However, it soon became clear that something wasn't right with Max. And so a journey, that none of us who haven't been on it can really understand, began. Elle recently posted the following:

"Max's diagnosis is MEF2C Syndrome (also known as MHS). It’s currently very rare but we are told it will become more common. The symptoms are; epilepsy (most have it but not all), completely non verbal, stereotypical movements and the inability to be still, doubly incontinent, hypotonia (low muscle tone), wide legged gait when walking,  (some children walk but not all), brain abnormalities, heart abnormalities (some not all) although a lot of our teenagers  have a fast heart rate, inability to control their temperature at times, kidney abnormalities (some not all), severe to profound learning difficulties, varying problems with eating, chest infections/pneumonia as youngsters, some distinctive physical anomalies  in face, feet and hands, anxiety and autistic tendencies. The thing that distinguishes our children are a love of books, TV programmes/cartoons, music, water and a very happy and content demeanour. Our children will essentially be babies for their entire life. It can be a devastating diagnosis for parents. What us parents live with day to day is SUDEP (sudden death by epilepsy), a child who needs constant entertaining, a child who will need appropriate adult supervision 24 hours a day, 365 days a year and  an unknown future prognosis.

This may sound melodramatic but never the less it’s very true, every morning we wake up is a good day. Us special needs parents, regardless of diagnosis, work very hard every single day, we live with things we dare not think about too much, we worry about our own mortality, what will happen to our children when we are gone, we are constantly judged so we only share our thoughts with others in our own situation, we put our children before ourselves so our bodies and mental health suffers. If we are lucky we have a support network around us, family and friends, we try to help each other but with limited time and energy this is not always possible. When we were ill, we don’t have time to be ill and we don’t have time to recover properly, we just get on with it, we are strong, we fight every inch of the way, but the emotional mental toll is usually what gets us every time, but, something kicks in and we pick ourselves up and battle on again.

Do you think I’m looking for sympathy, nope I’m absolutely not because there’s nothing to be sorry for, We love Max beyond measure. My life is hard, but it’s my perfect life and I’m a  better person for it. "

Max spends a lot of time at an additional needs centre called Little Miracles. They are a self- funded group within Ashington Children’s Centre in the North East and do a fantastic job in providing support for children like Max and giving an opportunity for parents to have a break.

Ashington Children's Centre is affiliated to Action for Children, which is a registered charity, and I have it confirmed that the funds raised will be directed to Little Miracles.

The ride is indeed a challenge; 467 kms from Coast to Coast in Costa Rica in hot conditions, over varied terrain and defined as 'extreme'.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving, they’ll never sell them on or send  unwanted emails. Once you donate, they’ll send your money directly to the charity. It's an efficient way to donate;  saving time and cutting costs for the charity.

So please dig deep and donate now to help me raise a significant sum to help enable Little Miracles to continue supporting Max and other children needing additional care and their parents.

Thanks for taking the time to visit my JustGiving page.