Dad's bike marathon for unit that saved his baby

“Grace was born at home like our three-year-old Lily. For the first two days everything was fine, although my mother in law did comment that she seemed a very sleepy baby,” explains Karen from Marton cum Grafton, North Yorks. “But on the Friday night I took her downstairs to feed her. She was bathed in sweat. I tried to feed her but she threw her arms out and just stopped breathing. I screamed for Matthew and moved her and it seemed to bring her round and we called for an ambulance.

“The first thing they did was do a blood sugar test. A normal baby’s level would be around 3.5, Grace’s was 0.9.” She was rushed to A&E in Harrogate before being transferred to a high dependency unit.

“We spent a week just not knowing whether our baby was going to pull through,” says Karen. Grace was diagnosed with congenital hyperinsulinism (CHI) a very rare condition affecting one in 25,000 to 50,000 children. It causes dangerously low blood sugar in babies and children due to uncontrolled release of insulin. It can lead to fits and brain damage, and can be fatal. Doctors found it hard to stabilise Grace’s condition.

“Every time they tried to reduce the medication her blood sugar levels would plummet again,” says Matthew. Grace was transferred to Leeds. It was hard as Karen was feeding Grace and so had to stay with her while family helped look after three year old Lily. “It was very hard on Lily she woke up in the morning I was gone,” says Karen.

It was a doctor who had worked at Northern Congenital Hyperinsulinism Service (NORCHI)in Manchester who eventually saw Grace and took over her care. She managed to get Grace stable enough to be allowed home after spending the first month of her life in hospital.

But she had to have five lots of medication a day at strict times, have blood tests pre feed and every four hours and her fluid intake monitored closely. Now, nearly eight months on Grace is now off the drugs and seems to be outgrowing the condition, although she is still under the care of NORCHI and her development will be monitored.

Now Matthew is raising money for the NORCHI unit and for research into the condition.

Matthew Streets and Pete Swanborough will be riding three marathon style mountain bike events over the Summer to raise money for NORCHI. The first in April is 100km, waymarked route with 4,000 feet of climbing, the second in July is 100km, self navigated with 6,000 feet of climbing and a ten hour deadline and the last and most difficult one in September, is 100km again with almost 10,000 feet of climbing. www.justgiving.com/Streetsswanborough1 or TEXT 70070 MSPS98£ followed by the amount