MEET ROWEN- my beautiful, adorable daughter!

You might be dazzled by her smiley eyes and not be able to tell that she was born with Moebius Syndrome.  This is a rare neurological disorder which primarily affects the muscles that control the face. It's so rare that only 1 in a million children are born with it and only 200 cases in the UK, 2000 cases worldwide and Rowen being the only one on the island.  All because she is missing her 6th and 7th cranial nerve in the brain. 

Until she has surgery when she is a bit older which may help her out a little bit, she is unable to drink, smile, frown, blink, cough, open her mouth properly etc and she feeds through a tube into her tum. Her development is a little slower than other kids her age but she is working hard on that!  When she isn’t at physio working on her six pack she can be found chilling in the sensory room at Rebecca House with the many wonderful members of staff who love having her around!

Rebecca House is a children’s wing in the Hospice, Isle of Man. It is a purpose-built facility that opened in November 2007 providing respite, palliative and end of life care for children with life-limiting or life-threatening conditions from birth to 18 years. Rebecca House offers a safe haven and a home from home environment in which physical, emotional, recreational and spiritual care is offered and implemented in a way appropriate to the child and their family.

It’s a great facility for Rowen and has really helped bring her on this last year, to have a facility like this it relies on fundraising from the public. I want to be able to give something back to say thank you for everything Rebecca House has done for Rowen so far and will do for the future so I will be taking part in the Isle of Man Parish Walk with a goal of getting to Peel (32 miles) and if I can go further I will!!

For those of you who do not know what the Parish Walk is, it is a unique endurance challenge where competitors have 24 hours to complete an 85 mile route which takes in all 17 different Parishes around the Island.

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