After a long battle with IVF, Louise and Raymond were elated to introduce newborn twins, Axel and Aria to their growing family. Their eldest daughter Charli was a doting big sister to her two younger siblings, and the family quickly settled into their new normal.
However, at nine months old, warning signs began to appear when Aria wasn’t gaining weight and refused to take her bottle. Doctors undertook an MRI, and Louise and Raymond’s little girl was diagnosed with Vanishing White Matter Disease, a rare and fatal form of Leukodystrophy.
Just months later, the family were rocked with more bad news, Aria’s twin brother Axel was diagnosed with another genetic disease, IQSEC2, for which he requires 24-hour care.
“It was a kick in the guts,” says Louise. “We couldn’t believe we were facing another rare genetic disease. It wasn’t terminal like Aria’s, but still had its own challenges. It felt like we just had one blow after another.”
It was at this point; the family were referred to Very Special Kids for emotional and clinical support. With the assistance of TLC Ambulance, Very Special Kids was able to curate a family trip to Melbourne Zoo, a lasting positive memory for Louise and her family.
“Being told that Aria didn’t have long, we weren’t really strong in ourselves to leave the house without anyone with us. We made a day trip to the zoo, which is one of the things we were wanting to do with the kids when they were born,” she says.
“We were greatly appreciative they made that happen and that we got to have that experience as a family.”
Aria sadly died in May 2021, at 19-months-old. Reflecting on her last moments with her daughter, Louise shares, “Aria was a fighter and fought to the very end. She was just so happy and so loved. She was always the cheeky one, and her spirit is alive in everything that we do. She is always here with us.”
Their family Support Practitioner, Angela, continued to provide emotional support to the family, helping them navigate their grief, and cope with looking after Axel during this difficult time.
Louise shares, “Very Special Kids has been a godsend. Angela has not only helped with Aria but has continued to support us through Axel’s journey. She has assisted me in so many areas, from preparing her funeral, to navigating school options for Axel, and helping with teachers at Charli’s school. It’s amazing how her care has extended to the whole family.”
Their seven-year-old daughter Charli also takes part in Very Special Kids’ online sibling support group, once a month.
Louise shares, “Charli seems to step out of her comfort zone a bit more, because she knows that the other kids are going through something similar to her. She has also taken part in the music therapy program. Which has helped her process her emotions and express herself a bit more.”
After Aria’s death, Louise, and her sister Rebecca wanted to find a way they could honour Aria’s memory. “We had drawers, and drawers full of clothing, and I knew that it wouldn’t be possible to keep all of this stuff. So, my sister and I decided to start sewing her clothes to turn them into something sentimental. Now I have blankets, toys for her brother Axel and sister Charli, so Aria is always close to them.
“Charli gets so much joy out of having a keepsake to remember Aria by. It gives her something to hold onto. Something she can play with, cuddle with, and provide that extra comfort of knowing that it’s her sister’s clothing.”
After gifting keepsakes to family members, Louise and Rebecca recognised, that they might be able to help other families who are going through a similar journey, so their business, Hold Me Forever was born.
Louise explains, “I’ve found it’s very therapeutic sewing her clothes and I also love that I may be able to help someone else who is in a similar situation. I understand what the grief is like, and I know the comfort that I get from it. We love to help others feel close to their loved one and give them a bit of closure, because I know how tough it can be.”
The family also honour Aria and Axel’s birthday each year by giving back and they have supported different charities, including Very Special Kids Giving Day last year. “Since we received Aria’s and Axel’s diagnosis, Ray and I have been on a mission to raise awareness for these rare conditions. Hoping it can help other families going through what we’ve been through.”
When asked what advice she would like to offer, other families who are on a similar journey, Louise said, “I want other families to know, they are not alone. To keep your family close and reach out to people who are going through the same thing as you. If anyone wants to talk, I’m always here, I’m happy to be a shoulder to cry on, share a story or help in any way. If you’ve got any questions, we’re more than happy to help out, and just give back support.”