ROSIE Woods first noticed that her son Louie was getting unexplained bruises on his body when he was just six months old.
Everyday activities, such as using a baby bath seat or sitting in a park swing, left him black and blue.
Louie always bruised easily[/caption]
But his parents had no idea how serious it was[/caption]
But it wasn’t until a GP referred Louie to a paediatrician at their local hospital that Rosie, 37, and husband Matt, 42, got answers.
“Louie had a series of blood tests a few weeks later and we were told he had severe haemophilia,” the mum, a marketing consultant from the Isle of Wight, said.
“We were completely heartbroken by his diagnosis,” she added.
“We feared for his future and what it meant for him moving forward in terms of leading a normal life and having a normal childhood.
“As well as his health, the thought of my child being in pain absolutely broke my heart.
Haemophilia is a rare condition that affects the blood’s ability to clot, causing individuals to bleed more easily than others.
Most cases of this condition have a family history, but Louie’s was unexpected, as there was no such history.
His diagnosis revealed he had the most severe form of haemophilia.
They were also warned he was at risk of spontaneous internal bleeding anywhere in his body.
However, things took a positive turn while they were waiting for Louie’s port surgery.
A new medication, a subcutaneous injection required just once every two weeks, was licensed by the NHS.
“It really was a complete and utter game changer for us all,” Rosie said.
“I was so worried about the psychological impact on him, as well as huge health worries.
“But he is in his second year of school now and is thriving.
“He plays with all his friends and does almost everything a normal six-year-old does.”
Despite the progress, Rosie admitted that injecting Louie is still a challenge.
Blood tests later down the line revealed he had severe haemophilia[/caption]
His parents were told he would Louie would have to take medication every other day through a port-a-cath placed in his chest[/caption]
Thankfully, a subcutaneous injection required just once every two weeks, was licensed by the NHS[/caption]
“Injecting a child is never easy,” she said.
“And I do suffer from a lot of anxiety around keeping him safe as he is still at risk of internal and external bleeding.
“We have to keep a closer eye on him than we would with another child.
“His big brother is incredibly good with him and helps us to keep him safe.”
ALWAYS SCARED SOMETHING WILL GO WRONG
Rosie believes that their experience has brought their family closer together.
“It is something that has to be a group effort.
“Keeping Louie safe and giving him the childhood he deserves always has been – and always will be – our main goal.
“Giving him his regular injections can be difficult and is something we have to overcome together”.
What is haemophilia?
Haemophilia is a rare inherited condition where the blood doesn’t clot properly.
This means people with haemophilia can bleed for longer after an injury, or sometimes even bleed internally without any obvious cause.
There are different types of haemophilia, with Haemophilia A being the most common.
The severity of the condition can vary, with some people only having mild bleeds, while others may experience serious, spontaneous bleeding.
Treatment usually involves regular injections of clotting factor proteins to prevent or control bleeding episodes.
Source: NHS
While things have “calmed down” for the family, the fear of something going wrong is never far from Rosie’s mind.
“The truth is this is a lifelong, non-curable condition which can have incredibly serious consequences,” she said.
“So this will never go away for us, it is something we have to live with and is just simply part of our lives now.”
GET BLEEDS CHECKED
Rosies advice to other parents going through this is to “ask questions about the condition and treatment options available as they differ greatly.
“Also, take each day as it comes,” she adds.
“Diagnosis is a difficult time, but you will come through this and learn to live with the condition as a family.
“If you think your child is having a bleed always get it checked and have a professional make the decision.”
Mum Rosie believes that their experience has brought their family closer together[/caption]
