Samuel Paul Morley August 16 th 2002 – June 12 th 2004

Priorities for children with exceptional healthcare needs identified by parents Introduction To Sam Medical History Support Conclusions

Introduction Family

Introduction Condition Menkes mutation on the X-chromosome, affects transport of copper into particular cells, varying degrees of severity, some parts of body affected more than others.

Introduction Condition little normal brain activity, poor visual ability, fragile bones, low muscle tone, feeding, bladder, breathing difficulties, constant infections.

Good hearing, Communicated using facial expressions, vocal sounds, head shaking and finger movements, Engaged the affection of those around him. Introduction Abilities

Medical History Birth – 10 months Birth - special care unit, Development - delayed, Seizures - first noticed at 4½ months, Feeding - gastrostomy at 9 months, Distress/Pain - unknown cause.

Medical History 10 – 17 months Medication - 30 oral medications each day, Feeding - jejenostomy, Bladder - diverticular led to catheritisation, Home - 15 weeks.

Medical History months Infections – major collapse, Feeding - put on weight, Respiratory - eventration, Bladder - bladder stones and regular blocking of catheter, Development - tiring more easily, showing less interest in play.

Support General Practice CHAS Royal Blind School Bright Sparks Pharmacy Palliative Care Team Health Visitor Therapists Outreach Team Social Work Hospital Caloreigh

Support Excellent Support communication, attention to detail, availability, compassion and understanding, good advice.

Conclusions The priority for Sam was to have the best quality of life possible. This involved Medical needs met Stimulation Love I believe that Sam had the best quality of life when he was at home with his family but to be at home involved high level of support. The biggest difficulty for Sam was getting his medical needs met whether he was at home or in the hospital.

Samuel Paul Morley August 16 th 2002 – June 12 th 2004