The De Haan Family, Nelson
Clara De Haan was born with a genetic kidney disease known as nephronophthisis, but was only recently diagnosed at 15 years old. Mum Ingrid recalls Clara complaining of tummy aches since she was a little girl but these were never thought to be anything serious. Around the age of 6 or 7 years she went to the doctor with these symptoms, but her having kidney disease was not considered.
By the time Clara turned 15 her parents noticed that her growth had slowed right down. They thought she may have been suffering from anaemia so took her to their doctor. In February 2008 doctors carried out further blood tests, only to find that Clara was already suffering from end stage renal failure and would need a new kidney quite soon. She was placed on a course of weekly injections to mimic her kidney function and reduce the anaemia.
Clara’s parents then began the process of testing to see if they were possible donor matches for Clara. This took longer than expected and Clara was to be placed on peritoneal dialysis at home due to her highly increased creatinine levels.
In April Clara first travelled to Starship with her parents to meet renal staff and stayed at Ronald McDonald House Auckland. Curious, Ingrid immediately jumped on the internet so she had an idea of what to expect when they arrived at Ronald McDonald House for the very first time, helping to alleviate any accommodation fears she had.
Their next stay at the House was in October so Clara could have a Tenckhoff tube (dialysis cord) inserted in her tummy. Shortly after that they spent another week in the House so Clara and her Mum could get the relevant training at Starship to administer her daily dialysis at home. Thankfully for Clara her dad Roelof was confirmed as a donor match and a transplant date was proposed.
The family was told Clara’s transplant date was set for 17 December and that they would once again be staying at Ronald McDonald House Auckland, this time for a number of weeks. In discussions after the transplant, Ingrid said: “Being from Nelson, we didn’t know Auckland at all. To have everything you needed under one roof and still be able to stay so close to the hospital helped us immensely, especially with regard to the daily blood tests.”
For the operation Clara and her Dad were joined by Mum and younger brother Hermann for support. They all stayed in one of the transplant rooms the House to minimise the chance of Clara picking up any bugs or infections.
“Having the use of a transplant room was fantastic, as Clara was immuno-suppressed following the operation. Knowing everything in our room, bathroom and small kitchen could be kept clean and sterile gave us such peace of mind.” The family was also in the House over Christmas, so having the transplant room enabled their eldest son Frederik to join them so they could all be together over this special period.
Last year, up until her transplant, Clara was a keen netball player, and will hopefully pick this sport up again once her body has had time to fully recover. She will need to remain on anti-rejection medication for the rest of her life so that her body doesn’t reject her new kidney, but aside from this, there’s nothing stopping Clara from living a completely normal and healthy life.
The RMH Auckland Trust funds and governs Ronald McDonald House Auckland (48 rooms), the Ronald McDonald House Family Room (13 short stay critical care rooms) in Starship Hospital and RMHA St Martins (16 offsite apartments). It is a registered community charitable trust comprised of the following partners: Auckland District Health Board, Child Cancer Foundation, Heart Children, The Rotary Club of Downtown Auckland, Ronald McDonald House Charities and 2 community representatives. The House, Family Room and St Martins provide a ‘home away from home’ for over 3,000 families of children with life-threatening illnesses each year. The Trust through its staff and partnerships actively fundraises throughout New Zealand to achieve the $3,000,000 p.a. it needs to run the facilities and support its families. Charity Registration number: CC23591