A much needed Family Holiday
Donation protected
It’s been yet another tough year for my 12-year-old son, Elijah. I’m hoping we can make some happy memories together during a week-long holiday to the Woburn Forest Centre Parcs this July. He certainly deserves some good times.
Arranging a holiday for Elijah is a task of epic proportions due to his complicated health needs. I had hoped to take him abroad one day but the logistics and costs mean it may never be possible.
Elijah was born with a rare genetic disorder called Apert Syndrome, which I also have. This is characterised by the premature fusion of certain skull bones, which prevents the skull from growing normally and affects the shape of the head and face.
When Elijah was 18 months old, he had surgery to fit bone distractors to help give his brain more space to grow. Unfortunately, he contracted a life-changing pneumococcal meningitis infection via the distractor site, which has left him with a catalogue of health issues such as epilepsy, hydrocephalus, neuromuscular scoliosis, osteoporosis, hip dysplasia, high muscle tone, spastic quadriplegia, body shape distortion, recurring clostridium difficile and pseudomonas infections, obstructive sleep apnoea, ocular hypertension, and many more.
In the last three months alone, Elijah has been admitted to hospital on seven separate occasions, with some of the stays lasting up to nine days. He’s had more seizures than usual, asthma attacks, infections, and a huge amount of pain. It’s not much fun for a 12-year-old boy.
The combination of these conditions and his frequent need for medical interventions means that, even out of hospital, Elijah requires two-to-one care 24 hours a day, 365 days a year. He has a dedicated ‘entourage’ (as we’ve dubbed them) – a team of nurses and care workers who are able to meet all of Elijah’s medical needs.
But, as you can imagine, this means that whenever we want to go away anywhere, members of Elijah’s team must come too. Although we travel with a skeleton team on the rare occasions we’re away from home for respite care or hospital appointments, we still need enough people to cover the day and night shifts in rotation.
For Elijah and me to enjoy a mother/son holiday at Center Parcs this summer with the necessary staff to support him, our booking will cost £9,396.00 this is for two properties as we need to accommodate staff, this does not include food or additional expenses. Our costings estimate it will be nearer £13,294.10 in total.
I have been able to contribute £4,440.60 from Elijah’s clinical negligence settlement towards reserving use of the Exclusive Adapted Lodge. I am currently going through the process of trying to get a social care payment as additional funding £8,853.50 however Elijah Disabled Children’s Team will only fund £1,700.00 for accommodation.
We had wanted to stay at the Longleat CenterParcs so that Elijah’s team could travel to and from home rather than needing overnight accommodation but the adapted lodge is fully booked, which is why we have had to book further afield at Woburn Forest.
We are all committed to giving Elijah a well-deserved break from hospital rooms (he spent a solid 12 months in hospital in 2015-16) but, as you can see, the financial implications are massive. We don’t know what the future holds, when the next hospital admission will be, but I do know that I have a boy who loves the outdoors and who will love the sights and sounds of Center Parcs.
Staff Mileage £1,148.00 Members of staff x 8 (319 miles round journey for each person)
Staff Food allowance £15.00 x 4 = 7 days - £420.00
Staff Travel time 5.5 round journey and salary for working away from their usually place of work £495.00
Staff Accommodation with self-catering facilities £3,048.00 - still to raise £1,348.00
Equipment Hire (I will explore what is already provided at Centerparcs) - These are costs if we hire a Mobile Hoist, Shower Trolley & Arm Chair £451.95 excluding VAT
Transportation of Elijah's belongings and equipment to holiday destination £525.00 (Elijah does not travel lightly)
Travel Insurance for Elijah to cover all his health related conditions should he not be able to go £858.15
Thank you for taking the time to read our story it is my hope that I can take my beautiful young boy on holiday we are very much hoping to go 30th July 2018 and we will be eternally grateful for any support you can give us.
Arranging a holiday for Elijah is a task of epic proportions due to his complicated health needs. I had hoped to take him abroad one day but the logistics and costs mean it may never be possible.
Elijah was born with a rare genetic disorder called Apert Syndrome, which I also have. This is characterised by the premature fusion of certain skull bones, which prevents the skull from growing normally and affects the shape of the head and face.
When Elijah was 18 months old, he had surgery to fit bone distractors to help give his brain more space to grow. Unfortunately, he contracted a life-changing pneumococcal meningitis infection via the distractor site, which has left him with a catalogue of health issues such as epilepsy, hydrocephalus, neuromuscular scoliosis, osteoporosis, hip dysplasia, high muscle tone, spastic quadriplegia, body shape distortion, recurring clostridium difficile and pseudomonas infections, obstructive sleep apnoea, ocular hypertension, and many more.
In the last three months alone, Elijah has been admitted to hospital on seven separate occasions, with some of the stays lasting up to nine days. He’s had more seizures than usual, asthma attacks, infections, and a huge amount of pain. It’s not much fun for a 12-year-old boy.
The combination of these conditions and his frequent need for medical interventions means that, even out of hospital, Elijah requires two-to-one care 24 hours a day, 365 days a year. He has a dedicated ‘entourage’ (as we’ve dubbed them) – a team of nurses and care workers who are able to meet all of Elijah’s medical needs.
But, as you can imagine, this means that whenever we want to go away anywhere, members of Elijah’s team must come too. Although we travel with a skeleton team on the rare occasions we’re away from home for respite care or hospital appointments, we still need enough people to cover the day and night shifts in rotation.
For Elijah and me to enjoy a mother/son holiday at Center Parcs this summer with the necessary staff to support him, our booking will cost £9,396.00 this is for two properties as we need to accommodate staff, this does not include food or additional expenses. Our costings estimate it will be nearer £13,294.10 in total.
I have been able to contribute £4,440.60 from Elijah’s clinical negligence settlement towards reserving use of the Exclusive Adapted Lodge. I am currently going through the process of trying to get a social care payment as additional funding £8,853.50 however Elijah Disabled Children’s Team will only fund £1,700.00 for accommodation.
We had wanted to stay at the Longleat CenterParcs so that Elijah’s team could travel to and from home rather than needing overnight accommodation but the adapted lodge is fully booked, which is why we have had to book further afield at Woburn Forest.
We are all committed to giving Elijah a well-deserved break from hospital rooms (he spent a solid 12 months in hospital in 2015-16) but, as you can see, the financial implications are massive. We don’t know what the future holds, when the next hospital admission will be, but I do know that I have a boy who loves the outdoors and who will love the sights and sounds of Center Parcs.
Staff Mileage £1,148.00 Members of staff x 8 (319 miles round journey for each person)
Staff Food allowance £15.00 x 4 = 7 days - £420.00
Staff Travel time 5.5 round journey and salary for working away from their usually place of work £495.00
Staff Accommodation with self-catering facilities £3,048.00 - still to raise £1,348.00
Equipment Hire (I will explore what is already provided at Centerparcs) - These are costs if we hire a Mobile Hoist, Shower Trolley & Arm Chair £451.95 excluding VAT
Transportation of Elijah's belongings and equipment to holiday destination £525.00 (Elijah does not travel lightly)
Travel Insurance for Elijah to cover all his health related conditions should he not be able to go £858.15
Thank you for taking the time to read our story it is my hope that I can take my beautiful young boy on holiday we are very much hoping to go 30th July 2018 and we will be eternally grateful for any support you can give us.
Organizer
Kaddy Thomas
Organizer
England
