Adam was born at 32 weeks and was starved of oxygen at birth

After he was born, Adam spent 13 weeks in intensive care and went through lots of surgery and hospital admissions during the first nine years of his life.

Mum and dad, Kerry and Karl, tell his story …

"When Adam was born we knew he would have some problems; he never learnt to feed from a bottle, never rolled over, and couldn’t sit or control his head. After his birth he was in and out of hospital and he had to be resuscitated several times,” explained his mum, Kerry.

"It was nine years until we got fully kitted out with equipment so that we could maintain Adam's blood oxygen level at home."

Adam has quadriplegic cerebral palsy, chronic lung disease and uncontrolled epilepsy. He has lots of seizures and severe reflux, which means he has to be fed directly into his stomach. As Adam has grown, his condition has worsened, as his chest and lungs are damaged due to the amount of chest infections he has endured.

The family first came to Bluebell Wood when Adam was six, and his little sister, Isla, was a baby.

Adam has visited Bluebell Wood many times over the years, often with his parents, Kerry and Karl. Adam enjoys arts and crafts, going in the Jacuzzi, music therapy and trips into the garden. Adam’s sister, Isla, enjoys coming to Bluebell Wood for sibling activity workshops such as baking and pottery making. 

Kerry said: "We’ve been coming to Bluebell Wood now for several years and it really feels like we’re part of the family.  Adam is now 16 and has defied all the odds, going from strength to strength.  We were originally told by doctors that Adam wouldn’t reach the age of seven so I’m incredibly proud of my resilient, brave, and determined boy who faces challenges on a daily basis. 

"Adam’s condition has progressed a lot since his birth meaning he now has a dislocated knee as well as dislocated hips and scoliosis. His chest is very fragile so unfortunately surgery isn't an option for him. He has a special wheelchair and equipment to make sure he is supported in a specific posture to slow down further deterioration and help with his breathing.

Kerry finds it really helpful to speak with other Bluebell Wood families experiencing similar journeys with their children.

"In the past few years, we've had difficulty maintaining Adam's weight. As Adam is fed through a tube directly to his stomach, we introduced blended foods to his diet.  It's good to exchange ideas with other parents who are also giving their children blended foods.

"We sometimes feel very isolated at home, so meeting other families at the hospice reassures us. Bluebell Wood is a support network; we really feel like we belong.”

"We enjoy helping to fundraise for Bluebell Wood and are so grateful to everyone who also helps to do this. Without them it wouldn’t be possible for families like us to have had such great support over the years."

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