Samuel Paul Morley

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Samuel Paul Morley

• August 16th 2002 June 12th 2004

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Priorities for children with exceptional
healthcare needs identified by parents

• Introduction To Sam
• Medical History
• Support
• Conclusions

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Introduction

• Family

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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.

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Introduction

• Condition

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

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Introduction

• Abilities

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

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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.

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Medical History

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

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Medical History

• 17- 22 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.

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Support

• General Practice
• CHAS
• Royal Blind School
• Bright Sparks
• Pharmacy
• Palliative Care Team

• Health Visitor
• Therapists
• Outreach Team
• Social Work
• Hospital
• Caloreigh

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Support

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

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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.

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Samuel Paul Morley

• August 16th 2002 June 12th 2004