Take a walk for Haemophilia Awareness Week

BY LYN WONG

A mother never loses sight of her loving purpose: to walk beside her child through life’s difficult journey, every step of the way.

In 2003, my beautiful son Jayden was born and my whole life changed right before my eyes. Now as we near the end of 2014, my 11 year sacrifice has come to fruition.  When you become a parent, you reorder your priorities and focus on what’s important – your child.

Jayden was diagnosed with the severe haemophilia A at two weeks of age. He suffered massive cerebral bleeding at birth and fought for his life in the Intensive Care Unit. It was a very stressful time in our lives, as we could not bring our baby home for three months.

The day of Jayden’s diagnosis, was the day my goals in life had changed. I gave up my career  to be a full-time mum and care for him as best I could. When you have a child with medical needs, everything in life can wait, and that meant my career and social life was no longer more important than my son’s health & well-being. I made sure he would not have to go through life’s challenges alone.

What is haemophilia?  

Haemophilia is a bleeding disorder where blood does not clot properly. It occurs when there is not  enough clotting factor –  a protein in the blood that controls bleeding.  In Australia, there are approximately 5,800 people with haemophilia, von Willebrand disorder and other related bleeding disorders.

Bleeding usually occurs internal. often into the joints or muscles. These bleeding episodes, or “bleeds”, may occur spontaneously, or as a result of trauma or injury. Specialised treatment is needed to help blood clot normally and is often infused or can be injected into a vein. If internal bleeding is not quickly stopped with treatment, it will result in pain and swelling. Over a period of time bleeding into joints and muscles can cause permanent damage such as arthritis, chronic pain and joint damage, which may require surgery.

Since birth, Jayden has bled repeatedly in both his lower limbs, and now requires a wheelchair during each bleeding episode. Jayden currently undergoes daily intravenous infusions, monthly blood tests, regular clinic appointments, weekly physiotherapy and hydrotherapy as well as weekly outpatient medical appointments to manage his condition. He has lost much of the strength in his legs and regularly uses a wheelchair, not just when he is having a bleed, but during each recovery and rehabilitation phase. He struggles to keep up with school work due to frequent hospital admissions, but he never gives up. He always tries his best, and does it with a smile. He now manages his own medical infusions every morning before school.

Jayden has bled eight times into his right ankle joint, and three times into his left. This has caused some damage to the tissues, nerves and the joint which has weakened his legs preventing his young energetic nature to play outdoors. In the last 2 years, he has pushed himself to attend regular hydrotherapy and physiotherapy to regain strength in both legs.

This year during Haemophilia Awareness Week, he is challenging himself to take a 7km walk around the Iron Cove Bay as part of The Red Trail. He want to inspire others living with haemophilia to never give up. He hopes his walk will help raise awareness about haemophilia and much needed funds to support others like him to lead a fulfilling life. The Red Trail will be held on Saturday October 18 and you can register here.

More information about haemophilia and other bleeding disorders can be found through the Haemophilia Foundation Australia. The organisation is also responsible for Red Cake Day, which runs as part of Haemophilia Awareness Week  from Sunday October 12 to Saturday October 18.