Kieran's Wishes & Final Journey
Donation protected
Our brother Kieran has Neurometabolic Mitochondrial Disease. Kieran requires round the clock care. We help to care for him at home along with our Mum and Dad, and with medical assistance from paediatric nursing, endocrinology, epilepsy, metabolic, palliative and urology teams.
Kieran’s health is deteriorating. Four months ago he was seriously ill. As a result he has been left with a urinal urostomy which requires round the clock drainage via a catheter. We are currently discussing Kieran’s end of life advanced care plan with his medical and palliative teams. As you can imagine, there are some very hard and emotional appointments ahead.
It is an especially difficult time for our family as we only lost our sister Stacey to the same condition 6 wks ago. Our sister Kristen also died as a result of Mitochondrial Disease aged 3 months.
We are trying to raise some money so that we can make a family trip to Disneyland Paris while Kieran is well enough. Kieran loves movies and we would like to make a family trip to London to explore some movie locations. Kieran’s eyesight is poor. We would like to buy a larger television so that he can better enjoy his favorite films.
Our family, set up the Children’s Mitochondrial Disease Network in 1998 to support other families, raise awareness and campaign for improved treatment. The Children’s Mitochondrial Disease Network has no paid staff and is supported entirely by donations.
Our parents have worked so hard for such a long time. They have spent many thousands of hours caring for Kieran, Stacey and Kristen, and over the years they have also supported numerous other parents of children with mitochondrial diseases. We’d like to help them now by giving them the chance to make some very special memories with Kieran.
Thank you. Stephanie, Kelly & Auntie Helen xx
Kieran’s health is deteriorating. Four months ago he was seriously ill. As a result he has been left with a urinal urostomy which requires round the clock drainage via a catheter. We are currently discussing Kieran’s end of life advanced care plan with his medical and palliative teams. As you can imagine, there are some very hard and emotional appointments ahead.
It is an especially difficult time for our family as we only lost our sister Stacey to the same condition 6 wks ago. Our sister Kristen also died as a result of Mitochondrial Disease aged 3 months.
We are trying to raise some money so that we can make a family trip to Disneyland Paris while Kieran is well enough. Kieran loves movies and we would like to make a family trip to London to explore some movie locations. Kieran’s eyesight is poor. We would like to buy a larger television so that he can better enjoy his favorite films.
Our family, set up the Children’s Mitochondrial Disease Network in 1998 to support other families, raise awareness and campaign for improved treatment. The Children’s Mitochondrial Disease Network has no paid staff and is supported entirely by donations.
Our parents have worked so hard for such a long time. They have spent many thousands of hours caring for Kieran, Stacey and Kristen, and over the years they have also supported numerous other parents of children with mitochondrial diseases. We’d like to help them now by giving them the chance to make some very special memories with Kieran.
Thank you. Stephanie, Kelly & Auntie Helen xx
Organizer
Paul Preston
Organizer