A Sheffield man is set to take part in the city’s biggest race to raise cash for a local hospice close to his heart.

Carl Blakemore (34) will run the SIG Insulations Sheffield Half Marathon on behalf of Bluebell Wood Children’s Hospice, where his son is due to spend time later this year.

Carl’s son, Callum, suffers from the rare brain disorder, Lissencephaly. He will spend two weeks of the year at Bluebell Wood, a hospice which offers respite care for terminally ill children.

Lissencephaly, which literally means ’smooth brain’, is a rare, gene-linked brain malformation characterised by the absence of normal convolutions (folds) in the brain. It is caused during embryonic development by defective neuronal migration, the process in which nerve cells move from their place of origin to their permanent location.

Callum, aged 15 months, was diagnosed with the life-limiting disorder aged just three months old, after suffering his first seizure. He now needs 24 hour care from Carl and his wife, Leanna.

Carl, from Aston, said: \"When Callum was born, he was a very happy little baby, and reached all of the normal milestones - like his first smile. Then at three months he suffered at fit, so we took him to the Sheffield Children’s Hospital, where he had a brain scan and was diagnosed with Lissencephaly. Understandably we were devastated and it was a huge shock.

\"We hadn’t heard of the condition, but when the specialist explained what it meant for Callum we knew our little boy would be poorly his whole life. He will never develop mentally beyond that of a three to six month old. It also means that he will never walk or talk, and suffers between ten and fifteen fits a day. He is also on the blind register as he is partially sighted.\"

The family have decided Callum would benefit from a stay at the North Anston-based hospice after visiting and seeing for themselves what the hospice, which includes a sensory room, can do for the children and the whole family.

Leanna (30), who works as a nurse, took a five year career break after Callum’s diagnosis so they could care for him round the clock.

Carl added: \"Because of this, we rarely see each other. Callum’s stay at the hospice will give us a chance to be a couple again for a while, and spend quality time with our four-year-old daughter, Bethany, and be parents rather than full time carers. The two weeks at the hospice can be used how we wish, so we can take a night, few days or a weekend at a time throughout the whole year.

\"It’s devastating to think Callum will never lead the life that we expected, but we try to stay positive to ensure that both our children get the love and care they need and deserve.

\"To give something back to the hospice is extremely important to me, so I chose to take part in the Sheffield Half Marathon to raise cash for them.

\"I started training for the race, but unfortunately I damaged my knee, so have been having physio to get back out there as soon as possible. I am determined to get round the course in one piece!\"

Helen Mower, community fundraiser at Bluebell Wood, said: \"We understand the enormous pressure that the families are under caring for a life-limited child 24 hours a day, 7 days a week. We will offer respite care to the whole family, and give them the opportunity to do ’normal’ things, as well as experiencing all the fun activities at the hospice.

\"As only very limited amount of our funding comes from the government, we rely heavily on donations from fundraising by members of the public. We are very grateful for the support from Carl, and we hope his son benefits from his stay at Bluebell Wood.\"

The SIG Insulations Sheffield Half Marathon and 3k Fun Run will take place on 26 April 2009 at Sheffield International Venues managed facility Don Valley Stadium from 9:30am.

For more information and to secure a place to run on behalf of the chosen charities, call 0114 230 8429, or visit http://www.sheffieldmarathon.com to enter online.

Sheffield Half Marathon