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Independent Appeal: 'We want to enjoy every moment'

A rare disease means Ellie Taylor's first Christmas is likely to be her last. But the Rainbow Trust is helping her make the most of her short life

The giant card behind the sofa says "Baby's First Christmas". But the parents of six-month-old Ellie Taylor – who lies, eyes sparkling, with a smile of sheer joy across her little face – know this is likely to be her last Christmas.

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Ellie seemed healthy enough when born. There were some complications with her birth, not least that a forceps delivery damaged her shoulder, inducing a paralysis called erbs palsy.

But at first all seemed well, her mother, Yasmin, thought. Having recently completed three years at university training to become a mental health nurse, she began to think about when she might return to work.

But after a few weeks her partner, Dale, a mechanic, noticed Ellie seemed to be moving a little less. "She wasn't kicking so much when I changed her nappy," he recalls. "I thought she was just getting more relaxed but my parents said something was not quite right".

The couple, both 22, from Salisbury, took Ellie to a health visitor. "She looked really worried and called the doctor in right away," Yasmin recalls. The GP sent them to the local hospital. "The paediatrician there did a 'floppy baby' test," she adds. "He placed her tummy on the palm of his hand. She didn't try to hold her head or legs up."

Dale says the specialist wanted more tests carried out "but he wouldn't tell us what for. He didn't seem bothered about her shoulder. So we went back the next day with my dad". This time the paediatrician sent them immediately to see a consultant neurologist in Southampton; they were told Ellie had spinal muscular atrophy (SMA).

SMA is a disease in which nerve cells in the spinal cord die off and muscles become gradually weaker. Ellie had SMA1, the most severe type.

"She'll never sit up," says Yasmin. Her husband adds: "It comes from a mutation of a gene called the SMN gene. One in 40 people are carriers. Yaz and I both are. The consultant said he gives Ellie up to a year to live."

Looking at the child, lying on a sheepskin rug on the sofa, that is hard to believe. When I say "hello" to her she fixes my eyes with hers and a smile slowly blossoms in response to mine. "She's so sociable," says her mum. "She loves people. She smiles at everyone."

It is almost as if she makes up for her inability to move much with the intensity of her gaze.

"She strokes your face in bed with little movements of her arm from her elbow, which she can manage," Yasmin says. Dale adds: "She likes holding small light toys," as he brandishes a tiny rubber snake before placing a flashing duck on her chest. Ellie smiles. Milk runs from an automatic feeder through a tiny tube inserted into her nose.

"She used to suck her thumb but since she got the tube she has stopped," her dad says. "She can't suck any more. She can't even swallow. So she watches any movement in the room."

Ellie is inexorably but unmistakably deteriorating. Two months ago she was feeding from a bottle. Now she has to be fed through the tube up her nose.

"We have a suction machine to clear her airways," says Yasmin. "When we first got it we used it once or twice a week. Now it's several times a day.

"She can't cough. She needs physio on her chest. She goes blue all the time, at least once a day.

"You can't cuddle her like a normal baby. She's sick every time you hold her upright, so you can't put her head on your shoulder as we could at one time."

Ellie cries weakly, a hoarse whisper of a cry. "She's uncomfortable," Yasmin says, shifting her daughter's position. "Her cry's so tiny you can't hear her if you're not in the room. Because she chokes silently, you can't leave her on her own for even a few minutes."

At night the couple use a monitor that fits over the baby's toe or finger to record her heart rate and the oxygen saturation levels in her blood. An alarm goes off if they fall below a certain point.

During the day Yasmin relies on the help of others to free her for a few moments to attend to personal or household matters.

Special baby equipment has been provided by a charity called Jennifer's Trust, which specialises in spinal muscular atrophy. But practical and emotional support is provided by Dawn Pond, 40, a family support worker with Rainbow Trust Children's Charity, one of the three groups being supported by Independent readers in our Christmas appeal this year.

"Dawn plays with her so I can get some housework done or have a shower," Yasmin says. "She needs stimulating all the time. She gets bored easily."

"I've been around for half of Ellie's life now," says Dawn. "You build a relationship and provide some time, especially when her partner and parents are at work during the day, when Yasmin can switch off for a couple of hours. And she knows that I'm at the end of the phone 24/7 if she needs me."

This year Rainbow Trust has supported 49 families through the death of a child and 1,000 families with children suffering life-limiting or terminal illnesses. Creating special memories at a child's last Christmas can be a particularly effective way of helping families live with grief.

Help from grandparents and Dawn mean Dale can continue to work full-time at the BMW garage, where his employers have been very generous in allowing him time off to tend to Ellie.

"They have been really understanding at work. They've been brilliant," he says. "They know I'll need a lot of time off when she dies," he adds with an apparent matter-of-factness that reveals how much growing up this young man has had to do in the past six months.

"She went into hospital with a cold recently," he recalls. "The doctor said she would probably get over it but that she could deteriorate. She will probably die in the end from a chest infection. He said we needed to think about end-of-life planning."

That is a cold piece of medical-speak for what this young couple have had to go through at an age when they should be blithely enjoying life's challenges rather than being confronted with the trauma of looming death.

"We've decided we don't want her on a ventilator, even though she could survive for much longer on one," he says. "It's about quality of life."

The couple are anxious to give Ellie as many quality experiences as is possible within her limited capabilities. Last Sunday they took her to a rare breeds farm and helped her to stroke a rabbit. "We disinfected her hands afterwards," Dale says. "Perhaps it wasn't terribly safe, but it was something we wanted her to experience.

"You have to work out whether you want to bubble-wrap her life or experience things." They have also taken her to see the wild and windy sea.

But in other areas they take no risks. They make sure that visitors do not have a cold before they are allowed into their maisonette home. "My sister couldn't come in last night when we had Ellie's six-month birthday party," Dale says.

The present is precious when the future is so certain. There may be no first birthday party for Ellie, so the Taylors celebrate what they can, with cake, candles, balloons and home-made six-month birthday cards that no shop would ever sell.

Among the guests were several other babies Ellie's age. "She loves chatting to other kids," Yasmin says. "They lie next to one another and she chats and squawks all the time to them."

On the wall is a ceramic plate fired from clay and imprinted with Ellie's footprints when she was 10 weeks old.

Among the photos is one of her in a pumpkin outfit Yasmin bought her for Halloween. Yasmin and Dale are determined to cram in as much as they can while they have the time, storing up memories for when she is no longer here. Baby Ellie is only here on loan.

Next, they know, will come breathing support – a tube to blow oxygen up her nostrils. At night to begin with, then around the clock.

Their daughter will die, they plan, in a hospice called Naomi House where they once took her for hydrotherapy, which she is no longer up to enjoying.

"We'd like the support of professionals, emotionally as well as practically," says Dale, "but the hospice is a lot more homely than the hospital."

But before that comes Christmas, which they have planned in detail. Ellie lies on her rug in a little Santa outfit she has donned for our photographer.

"We've bought her lots of presents," says Dale. "We keep seeing things we know she'll like and buy them for her."

"But we're not keeping them for Christmas Day," Yasmin adds. "We give them to her straight away – while she has the time to enjoy them."

Charities we are supporting

Save the Children

Save the Children works in 120 countries. The charity's vital work reaches more than 8 million children each year – keeping them alive, getting them into school and protecting them from harm. www.savethechildren.org.uk

The Children's Society

The Children's Society provides crucial support to vulnerable young people in England, including those who have run away from home. Many are desperate children who have experienced neglect, isolation or abuse, and all they want is a safe and happy home. www.childrenssociety.org.uk

Rainbow Trust Children's Charity

Rainbow Trust provides emotional and practical support for families who have a child with a life-threatening or terminal illness. For families living with a child who is going to die, Rainbow Trust is the support they wished they never had to turn to, but would struggle to cope without. www.rainbowtrust.org.uk

CLICK HERE TO DONATE NOW.

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