Linda Wyrill writes about a charitable organisation that is providing financial and emotional support to SA families with seriously ill children.
Some children have to fight harder for life than most. Hudson Maher was diagnosed with a rare blood disorder at three months, and died just nine months later, having undergone a bone-marrow transplant. But Hudson's legacy stretches far and wide to touch other families through the foundation set up in his name.
The day before Kaitie Francis turned two she was diagnosed with the rare genetic metabolic disease mucopolysaccharidosis type 1 Hurler syndrome. Kaitie needed life-saving stem-cell transplant treatment that wasn't available in Adelaide, so the family had to temporarily relocate to Sydney. Along with the shock of dealing with the potentially fatal disease their little girl had, the financial stress on Kaitie's parents, Kimberlee and Brad, was considerable.
Before leaving for their four-month stay, Kimberlee heard about the Hudson Maher Foundation (HMF), an Adelaide organisation that gives financial support to parents of children with life-threatening diseases requiring bone-marrow transplants.
Kimberlee recalls the relief HMF gave her family. "They were incredibly supportive," she says. "They paid for airline tickets for us to fly to Sydney, and flew my parents and Brad's over during our stay. They gave us weekly shopping vouchers. If we'd needed accommodation, they would have paid for that too." Kaitie’s family stayed at Ronald McDonald House during her treatment. "Not having to worry about money gave us more energy to focus on what was important, and that was Kaitie," says Kimberlee.
Kimberlee says having her family visit also gave much-needed emotional support, and that HMF's Tanya Maher was "always there if you needed anything". She said talking to someone who understood what she was going through made a huge difference.
Tanya Maher and her husband, Adelaide 36ers basketballer and Olympian Brett, started the foundation in mid-2004, after losing Hudson the previous year.
Hudson's diagnosis was haemophagocytic lymphohistiocytosis, and he needed a bone-marrow transplant, which meant a lengthy stay in Sydney. His treatment was covered by Medicare and private health insurance, but the associated costs of accommodation, food and travel to and from hospital in Sydney can be astronomical. "We didn’t want to stay at Ronald McDonald House," says Tanya. The constant proximity to Hudson's treatment, she says, would have been too much for their daughter Cheyenne, who was three at the time. So the family opted for private accommodation.
Compounding the situation was the rarity of Hudson’s disease. "He didn't fit anywhere," says Tanya. "Kids with rarer diseases have trouble meeting the criteria for financial support. We were lucky because of Brett’s profile. The Adelaide Crows and 36ers did gold-coin donations. While we were in Sydney, the 36ers held an auction to raise money." Because of this, the couple were able to afford their stay, and have family come over for support. "I needed that extra help for Cheyenne," says Tanya.
At the time of Hudson’s treatment, the Mahers’ three-month stay in Sydney cost about $35,000. Tanya and Brett remain grateful for the support they received during this time. "We started talking about a foundation while Hudson was having treatment," says Tanya. "We decided that whatever the outcome, we were going to help. We saw a need for support for blood-disorder, immune-deficient and bone-marrow diseases – for most of these children, bone-marrow transplant is their only hope of a cure."
Tanya says starting the foundation kept her busy after Hudson died. "I think that was my healing, doing something positive," she says. It's important to her that something good has come out of something devastating. Some of the funds raised by the Crows and 36ers during Hudson's treatment helped establish HMF. Since then, many more supporters have come on board.
Over the past three years, HMF has purchased four patient monitors, treatment chairs and two patient trolleys for SA's Women’s and Children's Hospital (WCH), and funded a bone-marrow transplant coordinator at the hospital.
At the heart of HMF are the 45 families it has sent to Sydney for bone-marrow transplants: five or six families each year since the foundation started. Parents apply for assistance from HMF through social workers at WCH. Parents can also contact Tanya by email or telephone (visit hudsonmaher.com.au for details). "Obviously I'm not a counsellor or social worker," says Tanya. "But some families want to touch base."
Kimberlee Francis says HMF's support has been ongoing. Happily, Kaitie survived her treatment, which was four years ago, but there are ongoing visits to WCH from their home in rural SA. "Kaitie has 14 different specialists she sees on rotation, and that will always be the case," Kimberlee says. HMF helps with costs such as hospital parking fees.
For those of us lucky enough not to have experienced the trauma of discovering our child has a life-threatening condition, it can be hard to appreciate the full extent of the relief and support HMF offers. As Kimberlee says, what HMF gives is "worth more than money: it's the genuine care and understanding from people who've been there. What they offer is amazing."
This article was first published in the October 2011 edition of Adelaide's Child.