Daryl - Ann

Daryl-Ann’s dad is going to climb Mt Everest!....on Dunedin’s Baldwin Street


Not known for his sportiness, Daryl-Ann’s dad has set himself a challenge – to climb the height of Mt Everest via Dunedin’s Baldwin Street, carrying a 23kg pack to raise funds for Daryl-Ann’s stem cell therapy … (read more)

Check out the climb on Facebook !!

If you would like to make a donation, sponsor Rob or participate in the climb, please email janine@darylann.co.nz
or txt or call 027 476 2546

Lone StarTo order Daryl-Ann's recipe book, please email janine@darylann.co.nz. Just $10 + $2 postage anywhere in NZ. Thanks for your support!

Toward a Brighter Future

Fundraising for Stem Cell Therapy for Daryl-Ann

Daryl-Ann was born on her due date, 22nd November, 2006. However she didn’t breathe. It took six minutes for NICU nurses to get her to take an assisted breath, and 20 minutes before she was breathing on her own.

This has left Daryl-Ann profoundly disabled. She has severe cerebral palsy, microcephaly (small head) and epilepsy – often 200 seizures a day.

Daryl-Ann Doctors told us that Daryl-Ann would be unlikely to see her first birthday, eat, drink, or even recognise us. She was in Dunedin’s NICU for three weeks, while we waited to see if she would wake up, and what would happen when she did.

Three days before we left NICU, Daryl-Ann breastfed for the first time. By four months old, we had started her on solids. In November 2007 we celebrated her first birthday and took her to Rotorua to meet the rest of her family, including her great-grandmother her passed away just days later, having held on to meet her special great-grandaughter.

In 2008 we learned of a new treatment that was stunning CP families and doctors in the US. Umbilical Cord Stem Cell Therapy. However cord blood banking was not the norm in NZ when Daryl-Ann was born, so we continued to investigate options using donated umbilical cord stem cells. In March 2009, in Tijuana, Daryl-Ann received her therapy, with awesome results. We waited with baited breath to see what would happen. Would she be ok? – she sure was. Even though our schedule was all over the place during our stay in the United States, Daryl-Ann somehow managed to start putting on weight for the first time in months. Before we left for the treatment, ACC had wanted to put a tube in her stomach to feed her through, but we put them off, knowing that other families had seen dramatic weight gain. Sure enough, we got just that. By the time we got back to NZ, Daryl-Ann had put on a third of a kilo,, and she just didn’t stop. Even when her tonsils and adenoids became enlarged (darn those normal 2 year old problems!) and she could barely breathe and gagged and vomited often – she maintained a weight of 10kg. As soon as the troublesome tonsils and adenoids were removed, her weight shot up again. She is now a very well covered 18.8kg, and constantly frustrates her physio team by having multiple growth spurts! She is much healthier for this extra weight, taking pressure off us as parents – no longer is every morsel of food a life or death situation, no longer does a cold mean a visit to the hospital, no longer is chicken pox and imminent threat on her life.

Daryl-Ann attends Jade Star daycare, where here classmates adore and include her. Daryl-Ann loves to be at ‘school’, her improved eyesight allows her to take in more and track the kids running around her, her improved settledness allows her to remain in her special chair or standing frame for extended periods, giving her a chance to participate in class activities. Her recent new vocalisations and expressions excite and entertain her peers.

While Daryl-Ann will never run around like her friends, and will always needs 24 hour assistance to get through her day, her quality of life has been greatly improved by this treatment, as has ours as a family. Life will never be ‘normal’ – but it’s a lot closer than it used to be. For that, we thank all those who supported us to raise the funds for her first trip.

Daryl-Ann will start school next year at the Concord Unit of Sara Cohen. Before she does, we will be taking her back for a second treatment. Improved technology means Daryl-Ann will receive more stem cells than last time, which we will couple with Hyperbaric Oxygen Treatment and intensive physio for the treatment period.

Again, we need to raise the $45,000 for the trip, and at the moment, we are halfway there. Thank you to those who have helped us to raise these funds in what has been a globally financially difficult two years. With the school year looming, we are kicking the fundraising into overdrive, so that next year, we can embark on a new chapter in our lives as a family; school for Daryl-Ann, and hopefully a new brother or sister not too far on the horizon. In the end, we just want a bit of ‘normal’ – and this treatment will help us to get that.

Please take a look around our site, and feel free to contact us. If you are in a similar boat to us, we are part of many national and international support groups for cerebral palsy, stem cell therapy and safer maternity systems, and are only too happy to help others to access this support or learn from our experiences.

Thank you for your support.

Janine, Rob & Daryl-Ann