Alba was a fighter from the very beginning. Born in Scotland, her parents, Roz and Adam, quickly realised something was wrong. She experienced seizures from day one, had noticeable physical differences, and struggled to keep food down.
They received the heartbreaking news that no parent ever wants to hear; their daughter’s condition was life-limiting. With heavy hearts and uncertain days ahead, the family was introduced to Jessie May when Alba was just six months old. Not long after, she was diagnosed with Congenital Disorder of Glycosylation Type 1d, a rare genetic condition with only 12 known cases.
“When Jessie May was recommended, everything started to feel a bit easier,” Roz recalls. “We didn’t want Alba to spend most of her life in a hospital, so having the nurses come to our home was a blessing.”
Leaving Alba in someone else’s care for the first time was terrifying, but Jessie May’s skilled nurses quickly earned Roz and Adam’s trust. “They became like family to us, offering emotional support alongside medical care. I could talk to them about anything,” Roz shares. Jessie May also gave the family precious moments together. “I’ll never forget the time Jessie May gave me and Adam an evening out. It was so nice to spend time together knowing Alba was in safe hands.”
Despite her challenges, Alba was full of personality. Roz remembers her mischievous side fondly. “She couldn’t move much, but she’d always find a way to pull her feeding tube out. She kept us on our toes.” One of Roz’s favorite memories is the artwork Alba made with Jessie May nurse Charlotte. “I’d come home to Halloween pictures, Christmas cards, and little drawings hidden around the house. Things I never thought she’d be able to do. That was really special.”
When Alba’s condition worsened, Jessie May worked closely with the family to create an end-of-life plan so she could spend her final moments at home. Alba died just weeks before her third birthday. Jessie May’s care continued, offering Roz and Adam vital bereavement support when they needed it most. “They were with us to the end, and they’re still with us now,” Roz says.
Five years later, Alba’s memory is still very much alive for Roz, Adam, and her brothers, Coupar and Barney. The family participates in Jessie May’s “Tree of Light” each year, hanging a star in her name. Coupar, now six, and Barney, just two, love placing the stars and sharing the rituals that keep Alba close. “Coupar talks about her often, and even Barney, who never met her, knows about her through stories and pictures,” Roz says. “Coupar once said Alba visited him, leaving behind her green marble. It brings up a mixture of emotions, but it’s comforting to see how much she means to him.”
Roz and Adam also attend Jessie May’s ‘Purple Group’. “It’s strange to be part of something that no one would ever imagine signing up to, but knowing you’re with people who understand – that’s been a huge help,” says Roz. For her, the meetings have been a space to share Alba’s story, to talk openly about her, to have a cry, and to know that Alba is remembered not just by her family, but by a community of people who can relate. “I’d be lost without it now,” she says.
Roz hopes sharing her experience will help others. “There’s no right or wrong way to grieve. Accept help when it’s offered, reach out to others in similar situations, and don’t be afraid to talk about your child. Keeping Alba’s memory alive helps us cope.”
Roz believes that sharing Alba’s story has been a crucial part of her healing. “We talk about her all the time. Even when the kids are in bed, Adam and I will sit and look through photos or talk about her. It’s nice for people to know about her.
She also encourages parents to allow themselves to feel whatever emotions come. “I’ve broken down in all kinds of places, mostly the car. For some people, it’s the shower, but for me, it’s the car. And that’s okay.”
At home, the family honours Alba with some meaningful rituals. On her birthday, they light the garden green, her favourite colour. On the anniversary of her funeral, the family play the songs from that day. On the anniversary of when she died, they read out messages that were put in a special jar from family and friends. At the beach, they write her name in the sand. “When we sign Christmas and birthday cards we want to include Alba so we pop ‘AK’ in a green heart in the bottom corner of the card. It was so upsetting thinking we were excluding her and this helped so much. And now some family and friends do it to us as well!”
Alba’s pre-school held a “green day” in memory of Alba, where everyone wore green to celebrate her life. “It’s so nice to know that others are thinking of her too,” Roz reflects. Every robin they see is also a reminder of her, and they make sure others know that as well. “We’ve told people about the robin, so now they think of her when they see one too.”
For Roz, these rituals are more than just acts of remembrance, they are a way to keep Alba’s presence alive in their everyday lives. “Talking about her, doing these things for her, it all helps. It’s hard, but it’s what keeps us going.”
Roz’s final piece of advice is to not make any hasty decisions after a child dies. “When Alba passed, we were happy to get rid of her medical equipment – those things were a constant reminder of what she had to endure, and we didn’t need that anymore. But we didn’t touch her cot, and we didn’t want anyone to move it. There’s a special blanket and the Jessie May memory bear too; those are things we treasure. I’m glad we didn’t rush. You don’t think about what you’re going to keep when your child dies, but it’s important to follow your heart when it does happen.”
Alba may be gone, but her memory is a bright light that continues to shine, nurtured by the support of Jessie May, and the love of a family that will never forget her.