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Parents of terminally-ill toddler sell their home and quit work to take her on dream holidays
Last updated at 16:31pm on 10.07.08
When parents Emma and Ben Powell were told by doctors their young daughter would not live beyond the age of 12, they were understandably devastated.
But they bravely decided to hide their heartbreak and instead made the ultimate to-do list for three-year-old Caitlin.
Emma, 30 and Ben, 31 have compiled a catalogue of dream holidays, exciting family adventures and fun-filled treats to ensure their remaining years with her are the most pleasurable possible.
They have sold their three-bedroom home for £100,000 and have quit their nine-to-five jobs to provide enough money and time for the busy schedule.
Ben and Emma Powell with daughters Chloe and Caitlin (left), who suffers from a terminal illness. The couple have sold their home to buy her the experiences of a lifetime while she can still enjoy them
First on the wish-list is to whisk Caitlin - who suffers from a rare brain disease called Sanfilippo Syndrome - and her seven-year-old sister Chloe to Florida next month.While they are in the sun-drenched US state, they will take in Disney Land and plan to treat the girls to a once-in-a-lifetime swim with dolphins during their two-week stay.
Back home, the couple have lined up visits to the Alton Towers and Legoland theme parks as well as a trip to the Scottish highlands.
They also want to encourage Caitlin's love of dance by taking her to London for a weekend so she can see a West End musical.
Later in the year, the family hope to fly to Lapland to meet Father Christmas in person.
And for 2009, they already have their sights on a thrilling African safari and plan to give Caitlin's bedroom a make-over with colourful lights and soft furnishings.
The youngster from West Heath, Birmingham, was diagnosed with Sanfilippo Syndrome last December.
Only one in 25,000 children are born with the condition, which attacks the brain, body cells and tissues, resulting in hyperactivity, sleep disorders, loss of speech, dementia and ultimately, death.
Ben and Emma Powell have planned a trip to Disney Land as part of their holiday to Florida next month. They also hope to swim with dolphins
Emma, who has quit her job as a bank clerk to be a full-time carer, said: 'I can't think about the future with Caitlin, it breaks my heart.
'She won't be with us for very long so myself and Ben have made a conscious decision to make every day special for her from now on.
'We have sold our home in Birmingham and are renting a flat nearby which is far cheaper than our mortgage.
'The money from the house sale is going to be ploughed into this wish-list for Caitlin.
'Next month we are spending £7,000 jetting to Florida to visit Disney Land and hopefully swim with dolphins. When we get back, there are more treats planned.
'We want to go on mini-breaks to Scotland and Cornwall, to go to Alton Towers and Legoland and maybe even London to see a show.
'Also on the list is a trip to see Santa in Lapland and an African safari.
'The problem with Sanfilippo Syndrome is that the disease robs you of your senses so we also want to convert Caitlin's bedroom into a sensory room with special colours and soft furnishings for her to touch.
'Although the money from the house sale should tide us over for a while, in order to keep the list going as long as possible, we have set up a charity to receive donations.
'It's hard coping with the knowledge that our daughter is going to die before she is a teenager but this gives us something to focus on. Caitlin's happiness is our motivation.'
Salesman Ben was working full-time as an executive for a tool hire firm but he has now heavily scaled down the number of shifts to be with his family.
Three-year-old Caitlin suffers from Sanfilippo Syndrome, which will rob her of her senses. Her parents are creating a sensory bedroom for her
He explained that he and Emma would take care of their daughter, who is in the second stages of the disease, for as long as possible.
But in the next couple of years, the couple will need help from specialists at a local children's hospice.
Ben said: 'A Sanfilippo child appears normal at birth and develops relatively normally for the first year so we had no idea there was a problem with Caitlin.
'But as more and more cells become damaged, symptoms begin to appear.
'We were shattered when we were told she had the disease and that she wouldn't outlive her childhood but we are a close-knit family.
'Eventually Caitlin will need 24-hour care and the situation will get worse for us as her condition worsens.
'But the time we have left with Caitlin is precious, and we want to ensure that we have some happy memories of times shared with her.'
A website has been launched to raise money for Caitlin's care and to help raise awareness of her disease - visit caitlinsdream.com for more.
Reader views (15)
Here's a sample of the latest views published.
let the little children come to me,(jesuschrist) ,do not forbid them:for of such is the kingdom of god.the book of luke 18:16 and he took them up in his arms , put his hands on them ,and bless them the book of mark 10:16 god really does the impossible when doctors can't . god makes the last choice. let's hope for the best he is the only one who can. the earth is only a place to live on our body but the soul and spirit last for ever,heaven is wonderful place.
- Elijah, burbank ,ca.
Dear Powell family,
I ran into this little article by mistake, but it is so inspiring. We have four daughters and both, my husband and I have always tried to enjoy them as much as as we could. Living in the US, life gets pretty busy and although we did a lot with our daughters, we couldn't always do quite as much as we wanted to. Reading about your situation gave me a different perspective on life... the truth is, none of us knows how much longer we have to live. We always assume that our child will come home from school, but death has no age limit, and eventually, we all have to go. The secret is to invest time and money in the relationships, and that's what you did. I believe you took the best approach possible when you found out about her situation - make her childhood the best and create tons of memories with her. It will be hard when she is gone, but you will always treasure those memories, you will always be able to go back through pictures and videos and just feel good about the decision you took. I congratulate you guys and I will pray for your family and for your daughters' health. May God bless and protect you guys and may God give your daughter health and happiness!
- Donna Avram, phoenix, AZ usa
My heart goes out to this family and so do my prayers. My sister lost her only son 2 years ago from a heart attack, and he was only 19 years old and the pain never goes away. We miss him so much. This family is going through a lot right now and they need all the prayers they can get. Do not take life for granted because you never know when it will be to late to tell that loved one you love them. I will pray for your family and hope things work out for your family. Love and prayers.
- Beverly, Easley, South Carolina
May God bless you and your children.
- Sherrol, Sioux Falls, South Dakota USA
To the Powell family;
Our warmest wishes are being sent to your family from our family! Please treasure each day and document it in a video-journal or something so you can always remember the special times to help you get through the bad times.
I have three year old twins, who have been such a blessing to us and we will be thinking happy and positive thoughts for your beautiful family! Have a wonderful adventure! Caitlin is so lucky to have parents like you.
Keep making each day special for her but for each one of you as well.
Peace and health to you all.
- Annie Haley, Toledo, Ohio USA
My heart goes out to this family. However, I hope the father is employed enough that they still have their health insurance. Also, I hope they don't wear the sweet children out with all the traveling. Sometimes, just being at home together, all safe and warm, is the very best place to be. May God hold them in the palms of His hands.
- Sarabeth Wolfe, Cleveland, Ohio USA
Being a new mother myself, I can try to imagine the pain you are going through. Your decision to quit your jobs to be the with family is wonderful. Do remember, though, that God is in control of everything. There is a purpose in all this, and a miracle is nothing too big for Him. I hope this draws you all closer together as a family.
- Cristina, Queens, NY USA
I have the utmost respect and admiration for this family. It's refreshing to hear that the money from the sale of their home will be used to help Caitlin enjoy what little time she has left. All too often parents sacrifice everything in search of miracle cures or experimental treatments, only to waste precious time that could have been spent with their dying child. My contribution is on the way along with my prayers.
- Katy, S.I, NY
It is a so sad when a child is ill...I hope and pray for her and her family that all time spent will leave great memories for her family and may her life that she does have be filled with all Joy and great laughs and happiness. I thank God every day for my 5 year old son.. he is the reason I breath every day. May God Bless this family with greatest of happiness.
- Anna Bell, Neenah, Wisconsin U.S.A.
My heart goes out to this little girl and her family. I have worked with very sick children in a hospital setting. It is a blessing that these parents have a home to sell and careers that enabled them to have that choice. Many terminally ill children come from impoverished homes and parents who do their best to cope. Little girls do not need much to live happily. They need the love and security of a stable family, a feeling of acceptance in the larger community, and an opportunity to interact with this glorious world. I applaud these parents for their sacrifice. As far as the charity goes, I would rather see those funds devoted to making the last days of life wonderful for ALL sick children.
- Pam, San Jose, Ca USA
The sacrifice they have made is so heartwarming and so very loving. Your daughter and your entire family are in my prayers. God bless you all.
- Ann, Brooklyn,New York , USA
May God bless you and your family.
- Trulley Bailey, Indiana
I think that is good to want to give your dying daughter good memories before she dies, but not to abandon your means of income, lifestyle and to sell your home. They do have another child they have to think about when the Caitlin dies and they should be prepared to give her a normal lifestyle afterwards and if you broke you will not be able to do that comfortably. They should take the money from donations and get Caitlin good health care that will allow her to live longer or find a cure, or better yet believe in God for a miracle to heal her. What if Caitlin ends up living a normal life? They will have peoples money and be living in luxury and the people who donated may get upset.
- Anonymous, Baltimore, MD-USA
I feel so sad for Caitlyn. And their family. But I hope Caitlyn has the time of her life while she can enjoy it. I am touched by the story and I wish I could do something to help them.
- Ryuu Yamakaze, Benson, North Carolina/ USA
Sold their house to give their young daughter the best possible time before her life ends. What wonderful, caring parents. where are all the millionaires out there who could have donated money to help these good people realise their daughter's dreams, without them having to sell their home. Shame on the filthy rich who are not moved by this young family's plight. No doubt it will be the likes of the OAP's who don't have much money who will be touched by this story and these are the people are usually dig deep into their pockets.
- Christine Nightingale, Watford, Herts
