Help the Dees in their time of need
Donation protected
Christmas is a special time and for our family being together has never been taken for granted. But this year our hearts are all breaking at the fear of one us not being there at what should be the happiest time of the year.
In October 1999, my sister Julie and Brother-in-law Lee received the devastating news that no loving parents should ever hear, it was confirmed that their son Jordan was diagnosed with Duchenne muscular dystrophy at the age of 4. Muscular dystrophy is a cruel muscle wasting condition that slowly robs boys of their mobility, independence and ultimately takes their lives prematurely. Jordan’s mobility deteriorated quickly and he has he been confided to a motorised wheelchair for most of his life. With fantastic support from the NHS throughout he has had the best of everything, even with the inability to use his fingers he has been facilitated with a specially adapted wheelchair that he can manoeuvre on a sixpence by small movements of his chin. I can honestly say Jordan and his family have always put on a brave face whilst travelling on what has been the worst of all emotional rollercoaster. Their life has been one massive battle and none of them have shied away from the fight. Jordan has taken it all in his stride and fought against his condition all his young life, with a everlasting list of appointment times and dates, constant trips to the hospital, multiple operations and daily medical procedures they have allowed nothing to get them down. At 23 years old his frail body is now deliveringits final betrayal and his vital organs are now shutting down.
Our life caring for Jordan has been a wonderful experience and we have cherished every moment. Jordan has been cared for at home and throughout his life, his Dad has been his primary carer. Jordan’s Mum went to college then onto University to qualify as a nurse and worked fulltime to keep an incoming wage coming in. In 2016, he took a massive turn for the worse and his care demanded he received 24-hour care. Jordan’s Mum faced a life changing dilemma of keep working as a full-time nurse at James Cook to provide for the family or, take a pay cut to spend what little time was left with Jordan and begin caring for Jordan to support his 24 hours care needs.
As a family, they have faced and fought every fight together, they say what doesn’t kill you makes you stronger but I disagree, this family is battered and bruised and are distraught.
As every day passes the pain is excruciating. Unfortunately, they have always known this day would come but it isn’tmaking it any easier for them.
Their world is in total turmoil and on top of everything they are now facing an uncertain immediate future, the little amount of savings they did have put away, have been eroded by meeting necessary living costs as Jordan’s paid carers, his Mum and Dad, are both facing a time of getting back into fulltime work, as their house has been adapted for people with additional needs, the council may require them to move out. Also, as a family car is provided under a mobility scheme to meet Jordan’s needs the car will have to be returned, leaving them without transport. Jordan’s condition makes him ineligible to obtaining insurance cover, leaving the family to cover all potential funeral costs to bury their beautiful boy.
Any money raised will help in supporting the humble needs of a well-deserved family who have given their all and are currently living a nightmare that every parent would dread.
One of the saddest things I’ve ever heard, ordered in the summer, Jordan’s Christmas pyjamas were delivered today in good time for him to wear on Christmas Eve.
Simply Heartbroken!
In October 1999, my sister Julie and Brother-in-law Lee received the devastating news that no loving parents should ever hear, it was confirmed that their son Jordan was diagnosed with Duchenne muscular dystrophy at the age of 4. Muscular dystrophy is a cruel muscle wasting condition that slowly robs boys of their mobility, independence and ultimately takes their lives prematurely. Jordan’s mobility deteriorated quickly and he has he been confided to a motorised wheelchair for most of his life. With fantastic support from the NHS throughout he has had the best of everything, even with the inability to use his fingers he has been facilitated with a specially adapted wheelchair that he can manoeuvre on a sixpence by small movements of his chin. I can honestly say Jordan and his family have always put on a brave face whilst travelling on what has been the worst of all emotional rollercoaster. Their life has been one massive battle and none of them have shied away from the fight. Jordan has taken it all in his stride and fought against his condition all his young life, with a everlasting list of appointment times and dates, constant trips to the hospital, multiple operations and daily medical procedures they have allowed nothing to get them down. At 23 years old his frail body is now deliveringits final betrayal and his vital organs are now shutting down.
Our life caring for Jordan has been a wonderful experience and we have cherished every moment. Jordan has been cared for at home and throughout his life, his Dad has been his primary carer. Jordan’s Mum went to college then onto University to qualify as a nurse and worked fulltime to keep an incoming wage coming in. In 2016, he took a massive turn for the worse and his care demanded he received 24-hour care. Jordan’s Mum faced a life changing dilemma of keep working as a full-time nurse at James Cook to provide for the family or, take a pay cut to spend what little time was left with Jordan and begin caring for Jordan to support his 24 hours care needs.
As a family, they have faced and fought every fight together, they say what doesn’t kill you makes you stronger but I disagree, this family is battered and bruised and are distraught.
As every day passes the pain is excruciating. Unfortunately, they have always known this day would come but it isn’tmaking it any easier for them.
Their world is in total turmoil and on top of everything they are now facing an uncertain immediate future, the little amount of savings they did have put away, have been eroded by meeting necessary living costs as Jordan’s paid carers, his Mum and Dad, are both facing a time of getting back into fulltime work, as their house has been adapted for people with additional needs, the council may require them to move out. Also, as a family car is provided under a mobility scheme to meet Jordan’s needs the car will have to be returned, leaving them without transport. Jordan’s condition makes him ineligible to obtaining insurance cover, leaving the family to cover all potential funeral costs to bury their beautiful boy.
Any money raised will help in supporting the humble needs of a well-deserved family who have given their all and are currently living a nightmare that every parent would dread.
One of the saddest things I’ve ever heard, ordered in the summer, Jordan’s Christmas pyjamas were delivered today in good time for him to wear on Christmas Eve.
Simply Heartbroken!
Organizer
Phil Tate
Organizer
