Lyn Wong is a member of Haemophilia Foundation NSW
This article is adapted from the article in Factor Matters, the newsletter of Haemophilia Foundation NSW, March 2014 and is reprinted with permission.
HFA supports a range of community programs and services across Australia. These programs include family and youth camps, mentoring programs, boys’ day out and men’s and women’s peer support groups. They are supported by donations from individual donors, business, service clubs, and philanthropic trusts and foundations.
For more information, visit the HFA web site or call HFA on 1800 807 173.
This story by Lyn Wong describes her son Jayden’s time at the HFNSW Camp in November last year. It is a great example of how important camps can be for families, as an experience, for the fun and adventure and the peer support.
Camps for children living with an incurable life-long disorder can mean so much to them on so many levels, physically, mentally and emotionally. When living with a rare disorder like haemophilia, isolation and despair can often take over their lives, as it's difficult for them to associate themselves with others 'just like them' in the school or general public environment. In 99% of cases, they are the 'only one' with haemophilia at school, at a park, or at a party. For them, seeing other kids without haemophilia, doing all the 'normal' play activities without the side effects that they endure, can sometimes leave them feeling upset and wondering 'why me?', especially when they end up limping, in pain or requiring blood clotting medications after an outdoor activity.
This is why it is vital to have on-going support through the opportunities that the annual Haemophilia Camp can offer to our children, as well as their siblings, parents and caregivers. It gives them a place of 'belonging', knowing that they won't be the only child in pain, or cannot climb as high due to weak joints, and that regular factor infusions is the norm of every haemophilia family. Children with haemophilia do feel more connected with their fellow friends with the same condition. The understanding amongst our 'Haemophilia Family' makes a huge difference to each of us.
A perfect example was when my son Jayden started feeling very sore in his legs by lunchtime on Saturday at camp. He needed to take a break and rest his legs. His haemophilia buddy, also named Jayden, felt the same way too. They both had sore legs and both needed a rest. That was all it took to make him feel so not alone! Jayden said "Finally, I have someone else that has sore legs like me, and we can take a rest together! I don't have to sit all by myself while others continue playing. Yay, I'm not the only one!"
Jayden, now aged 10, was born with severe haemophilia A. His condition was discovered shortly after his birth when he suffered two brain haemorrhages. Soon after, Jayden’s haematologist discovered he had developed inhibitors, or antibodies, to clotting factor treatment which made his treatment less effective.
Jayden has had numerous bleeding episodes in both his legs throughout his childhood. He currently undergoes daily injections, 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 sometimes has to use a wheelchair when he is having a bleed and during each recovery and rehabilitation phase.
In spite of this, I try to make sure Jayden lives as normal a life as he can, by taking part in as many activities as possible, including swimming, non-contact karate and, of course, camp. Having inhibitors means Jayden is a bit more restricted in what he can do, compared to other children with bleeding disorders.
This year Jayden participated a lot more than he did at previous camps. Since the removal of his central venous line in 2012, he gained the freedom to swim and from there, he progressed to more active sports that helped boost his confidence and overall fitness. His self-esteem improved and his increased participation in camp activities made this year's event a huge success. The extra entertainment such as the Reptile Walkabout Show, the Magic Show, and Children's Movie Night provided even more fun for kids of all ages.
Jayden also found Venipuncture Training very helpful in combatting his fears of self-infusion by watching the teenage boys with haemophilia demonstrating how venipuncture is done on yourself, without the need of a parent to manage their medical routine. He knew that if he started to do his own infusions, it would give him a sense of independence; hence, he is now more determined to try harder to fight his fears of needles.
The highlight of camp was definitely rock climbing, archery, laser wars and indoor ball games, all of which he thoroughly enjoyed.
Coming to camp this year has lifted his morale and hopes for a more positive future living with haemophilia
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