Tot’s parents just want to see her smile for Christmas
The parents of a little girl who was brain damaged and had to be put into a coma at just six weeks old are daring to hope their wish of seeing her smile again will come true in time for her first Christmas.
Ten-month-old Skylar McLean from Stevenage, Hertfordshire, was a healthy and happy baby until, at six weeks-old, doctors discovered she had bleeding on her brain.
Mum Sue, 39, said: “We’ve never been more scared than the moment the doctors told us they had to put Skylar into a coma to save her life. We were so close to losing her. She was in the coma for eight days and every minute of each of those days we didn’t know if our beautiful little girl was going to make it. We couldn’t even hold her.
“When she was born, Skylar was a happy baby who had a beaming smile. But since the seizures and the damage they have that has now caused to her brain, she hasn’t smiled again. It’s heart-breaking.”
Skylar has spent most of her short life so far in pain, having been diagnosed with a condition called dystonia which causes her to have severe muscle spasms. The tot also has cerebral palsy, a rare form of diabetes and is registered blind.
“Because of the pain caused by her illness,” said dad Duncan, 38, “Skylar can barely sleep and screams most of the day and night. She has been fighting all her life and so fighting is all she knows, she can’t switch off.
“The doctors think now that it’s possible that part of Skylar’s brain wasn’t properly developed or that the blood could have been on her brain before she was even born. We don’t know, though. Maybe we never will.
“What has happened to us as a family is devastating. I wouldn’t wish it on my worst enemy. Skylar can’t do most of the things other children of her age can - she can’t sit up or play with toys. That’s hard to accept, but this Christmas all we really want is to see our baby smile again.”
For months the couple was on edge - forced to see their child suffering in constant pain while getting few answers back from doctors about how to make it stop.
“It has been a difficult and exhausting time for us - we’re emotionally drained. But just when we hit breaking point our amazing local charity, Keech Hospice Care - the children’s hospice of Bedfordshire, Hertfordshire and Milton Keynes, and the adult hospice for Luton and south Bedfordshire - came into our lives. We don’t know where we’d be without them,” said Sue.
“Because of Keech Hospice Care, Skylar’s transformation has been amazing. Within a few hours on our first visit, the hospice’s doctors and nurses had changed her medication to help manage her pain. She had been scrunching her little hands so hard because of the pain that her nails were digging in and cutting into her skin, but Keech helped with that too. Even just the fact that we can call the hospice any time of the day or night means so much. Sometimes you just need someone to talk to when you don’t know what to do.
“Going out on day trips with Keech Hospice Care also gets us out of the house in a way that I feel we are safe because the nurses are there if she gets poorly and all the parents support each other.
“Because Skylar has been so ill, this year has also placed a huge financial strain on us and I’ve had to have a lot of time off work, so we won’t be having a big Christmas,” said Duncan. “But we’re hoping that, with the help of Keech Hospice Care, our wish will come true and we’ll be able to see Skylar smile on Christmas Day. Really, though, we’re just so grateful she is still with us.
“I know Christmas can be expensive but if you can, please donate to Keech Hospice Care this Christmas and help this brilliant charity to help more children and families like ours. Keech Hospice Care is our lifesaver - please help make the difference when it matters the most this Christmas time.”
To donate to Keech Hospice Care this Christmas by visiting: www.keech.org.uk/donate