Heartbreaking moment Jenny was faced with losing little Blake

THE mother of a young boy born with a degenerative condition has described the heartbreaking moment she was faced with the prospect of losing her son.

Jenny Howe’s son Blake McMillan, 7, was fighting for his life in hospital over the festive period after his condition became septic.

On Christmas Day he developed pneumonia and his life hung in the balance.

Doctors told Jenny there was little else they could do and their only option was to incubate Blake and put him on life support which medics were not in favour of as they didn’t think it was in his best interests.

As Jenny faced up to the prospect of losing her son and prepared herself for the worst possible scenario, Blake defied doctors’ predictions and rallied to come back from the brink.

And last Thursday, after more than nine weeks in hospital, Blake finally returned home having battled back from a near-death situation for the third time in four years.

Jenny said: “I always thought that when the time came I would know what to do but when it happened I just wasn’t ready to let my boy go. I did not want to lose him.

“He is such a fighter and he began to improve.

“Last Thursday, after nine weeks and four days, Blake finally got back home where he belongs.

“It’s lovely to have Blake home. He does have a bit of a bad chest so we will need to keep on top of that.

“I feel a bit lost and unsure as I haven’t had him home in so long. He’s looking about as if to say ‘where am I?’”

The youngster, from Carnoustie, was diagnosed with MECP2 duplication syndrome at just three weeks old.

The condition means Blake can’t walk or sit without full support, although he can move his head and limbs.

There is no known cure for the condition.

For several years, Jenny has raised money both to look after Blake and also for research into the condition.

Tomorrow she will leave Blake at home as she heads to Houston, Texas, where she is participating in the MECP2 duplication syndrome conference.

Jenny said: “It’s going to be very hard to go away and leave Blake but this conference is important and I know I need to go and play my part.

“Experiments are being carried out in Dr Huda Zoghbi’s lab at Baylor College of Medicine in Houston and have now moved into the clinical trial planning stage with the pharmaceutical company. We hope they will be ready within the next year or so. A reversal of the condition looks likely.

“I still hope that one day they will find a cure for this dreadful condition.

“Clinical trials into a drug are about to begin and while there may not be a cure in time for Blake I am hopeful it is just around the corner.

“Doctors we have worked with have told me that if it hadn’t been for Blake, a lot of the work and research into this condition might never have happened.”

Jenny admits it could be too late for her son to benefit from drugs which help MECP2 duplication syndrome – but she hopes his fight against the condition can be his lasting legacy.

She said: “If nothing else, it will be Blake’s legacy to have played a major part in helping to get rid of this illness.

“He is an amazing, loving little boy and he doesn’t even know the part he has played in all the work that is going on around the condition.

“I hold on to the fact that he is a brave fighter with incredible strength and a desire to live. Once again he is pulling through another significant illness.

“I call my fundraising page Hope for Blake because that is what I have and that is what keeps me going every day.

“Without hope, life would be even harder than it is already, but due to Dr Zoghbi and her amazing team, I can get up every day, love and care for my son, look into his amazing eyes and tell him we are doing everything possible to help him.”