Rare-illness charity at risk
Halved grant has group struggling to survive, aid families
Alifeline for thousands of Kiwi families fighting crippling rare disorders fears closure due to financial woes.
Two years after its annual government grant was halved — to $60,000 — the head of Rare Disorders New Zealand says it is struggling to make ends meet.
“Closure is a real fear, we have no guarantee of surviving these next few years — it’s not a very confident picture,” said chief executive Lisa Foster.
“If we don’t survive as an organisation what is that saying to all those families: That you don’t matter?”
Health Minister Andrew Little told the Herald he was “sympathetic” to such families and was committed to ensuring they received a good level of support. Little could not say why the organisation’s funding was cut or make specific promises to ensure the organisation’s survival.
“I am willing to engage with the community to learn more about the challenges they face and I look forward to doing so in due course,” he said.
Ashburton mum-of-four Alanna Peck, 34, is among thousands of Kiwis, including patients’ family members, who rely on RDNZ for support.
Her 6-year-old son, Lachlan, has a rare condition known as DiGeorge or 22q11.2 deletion syndrome. It’s responsible for poor development of bodily systems including hearing, speech, eating and the heart.
Found in about one in 4000 live births, no two babies with the disorder face the exact same challenges, making it even tougher to detect.
To doctors, Lachlan — described by his mum as “a cheeky dude” — appeared healthy but Peck knew something was wrong.
“I’ve been called paranoid, a hypochondriac and all sorts of names from medical professionals, it felt really nasty.
“He was my third baby. He was born with a lot of mucus in his mouth but the midwife wouldn’t clear that, and when he was 18 hours old he had a choking episode and milk started coming out his nose when he was feeding. I knew something was wrong.”
When he was 15 months old, she and husband Russell discovered he was deaf. They realised after noticing Lachlan responding to the sound of his builder dad’s nailgun.
“The nurse that was doing the hearing test said, ‘Something’s not quite right. Keep pushing and don’t stop until you get answers’.”
Those answers came slowly. So too the realisation that Lachlan was paralysed on one side, which was displacing organs. Although he had multiple surgeries, it wasn’t until he was 3-and-a-half that he was officially diagnosed with DiGeorge. And then his parents faced battles for treatment and support.
Amid the fear and uncertainty, connecting with RDNZ gave Peck hope. The charity linked her with families in similar situations; conferences where overseas medical professionals spoke about the condition; and advocacy — to know what help was available and how to get it.
“Being connected with other people going through a similar experience means everything,” says Peck.
Foster, who has four staff and one volunteer, said the lower grant had meant a bigger focus on fundraising and less time for families.
“There’s so much more potential [to help] but we are struggling to capitalise on opportunity.”
RDNZ was set up 20 years ago by patient advocate John Forman. The charity has fought for clearer medical procedures around the diagnosis and treatment of rare disorders but the Ministry of Health would not budge.
A Ministry of Health spokeswoman said it met regularly and worked closely with RDNZ: “The ministry is also committed to facilitating and supporting conversations with other organisations and agencies, to help achieve RDNZ’s goal of improving the overall support available for people with rare disorders, and the people who care for them.”
Foster hopes the Government will commit to ensuring the charity’s survival — and do more to help families.