On 1st March 1999, our son Matthew was born 3 months premature weighing in at 900 grams. He spent the first 7 months in Intensive Care and then the next 14 months in the Children’s Hospital at Westmead. Matthew has multiple medical needs including Cerebral Palsy, Progressive Cerebellar Atrophy, Intellectual Disability, Chronic Lung Disease, Hypothyroidism, Raynaud’s Syndrome, and Hypoglycaemia. Matthew is confined to a wheelchair for mobility, is tube feed and has supplementary oxygen on occasions. Despite Matthews medical needs he is a happy and social young man who embraces life to the fullest.
Matthew and his family were fortunate to have the opportunity to stay at Bear Cottage many times as he was growing up. While Matthew spent a lot of time in hospital throughout his life it was a blessing to have Bear Cottage as an alternative to hospital stays. A place where Matthews and his family could relax while relying on expert medical assistance. Bear Cottage is a safe, happy place where we could all have a complete break with Matthew and spent some quality family time.
Matthew loved attending Bear Cottage, giving him the opportunity to not only bond with other children with medical issues but the chance to play with siblings, volunteers, and familiar staff on a regular basis. He could laugh, play, sing and have fun at Bear Cottage while offering a time away from regular therapists and doctors.
Unfortunately, when Matthew turned 18, he was no longer eligible to attend Bear Cottage, and this has been a real void in his life. He no longer has access to a respite service which caters to his needs. There are no services available to Matthew or his family which takes the place of Bear Cottage. Services that can be accessed are not appropriate to Matthew and his complex needs. The services are either not age appropriate or do not offer the complex medical support that Matthew requires. He also likes to spend time with his family and Bear Cottage offered a place where Matthew could spend time away from home yet have familiar faces around him. Bear Cottage also offered the family invaluable support from medical personal and other families with special need children.
Matthew is looking forward to attending a Young Adolescent Hospice so he can once again enjoy a safe happy environment where he can interact with other young adults with special needs knowing that his health needs will also be managed by state of the art medical personal.
As Matthews parents, we are anxious to again spend time with other parents and family members in similar situations .Comparing stories and knowing we are not alone in this tiring journey of looking after a chronically ill child is an integral part of our emotional wellbeing . The support and advise we receive from other parents as well as staff really assist us in an often lonely and isolated journey.
The positive impact Bear Cottage has had on the wellbeing of Matthew and his family is immeasurable and it is our hope that in the near future The Young Adult Hospice can provide Matthew and his family the same support that is an integral part of his ongoing care.
