“And with that love and hope we allow our children to amaze us with what they can do, instead of what they may not be able to.”
Jacqui, mum to Mason
When Jacqui’s baby boy was gingerly holding his leg at an odd angle she knew that something was wrong. With her husband, Todd, away for work she was left alone to take baby Mason to the doctor for what she thought would be a fairly routine appointment.
Inconclusive tests and bruising behind his knee sent them to the hospital where it was feared he had a spiral fracture in his leg – a condition that automatically flagged them with child protective services and led to a tense hospital experience.
Any parent’s first visit to the emergency room can be traumatic, but not knowing what was going on with her baby left Jacqui feeling distraught. “I know that a lot of children do slip through the cracks, so I understood why they questioned me like they did, but it was still really daunting being kept in the dark.”
When they were told that Mason was diagnosed with haemophilia, his bruising suddenly made sense. Flooded with information about what haemophilia was, they were sent on their way feeling lost and unsure about how their lives would change.
Within four weeks, Mason had back-to-back knee and ankle bleeds, and at just five months old he underwent surgery to have a port inserted so he could begin his prophylactic treatment to help prevent future bleeds.
“It was completely overwhelming. You think instantly about how the rest of your life is going to be affected, how your son’s life is going to be affected and what limitations will be put on him…I was really scared about holding him back.”
Getting through this time was helped by “some pretty amazing” specialist haemophilia nurses, and Jacqui also connected with their local haemophilia foundation and had great assistance from them.
I was lucky enough to find another mum at our hospital with a little boy only two or three months older than Mason, who was diagnosed around the same time. So I was really lucky that I had her there for support.”
As Mason has grown in size and confidence, and connects with other children in the same situation through Haemophilia Foundation camps and events, he has been able to become an active boy with a love for BMX bikes.
Jacqui hopes that by raising awareness of haemophilia, there will be a better understanding of this rare condition among families, teachers and the general community so that Mason and other children with haemophilia can grow up with a healthy feeling of acceptance and support from their community.