Sebastian and his family joined the Moments Program in July 2021.
Sebastian has a diagnosis of nonketotic hyperglycinaemia, a painful, incurable, and life-limiting illness causing seizures, scoliosis, decreased muscle tone and profound developmental delays.
His life is filled with medical appointments and hospital admissions. For families like Sebastian's, caring for a child with such complex medical needs can be exhausting and extremely lonely. Sebastian’s mum Sandra says, “Because Seb's scoliosis is inoperable, it's increasingly getting hard for him to get out of the house, so it can tend to feel like we're forgotten, or that we've isolated ourselves.”
In the midst of these difficult times, the ongoing care of Starlight’s Moments program has helped remind Sandra that she and her family are not alone. By getting to know the family and understanding their individual needs, the program helps to bring small moments of light to Sandra and her family through special deliveries and experiences designed to bring them joy.
Sandra recalls, “During a particularly challenging time a package arrived for me. It wasn't my birthday, and it wasn't Mother's Day, it was just a gift for me. It came at a time when I really needed to be uplifted — and the gift was incredible and so thoughtful... it made a huge impact on me”.
“Starlight has helped not just me but Seb and his dad as well — the light in Ben's face when he's received some kind of gift, no matter how big or small — it really has changed our mindset. It changes your heart when you feel alone, or maybe not feeling 100%.”
For Sebastian, the smiles keep coming with each arrival of a special Moments package. Sebastian LOVES all things space, so of course the Moments team are always on the lookout for space-themed gifts to brighten Seb's day. Sebastian was thrilled to receive a galactic themed projector for his room so he can look into space from his very own bed! Recently he has also received some socks with rockets on them, a glass planet dome, and even a rocket launcher his family can help him play with!
Knowing they are being thought of as they face the toughest of challenges has been life changing for Sebastian and his family.
“The Moments program has really helped us at times when we've felt maybe a little bit low or maybe a little bit forgotten, just by life in general. It's been a real blessing to us, thank you.”
By understanding a family’s needs, and delivering small but impactful moments of joy, celebration and connection, Starlight Moments is helping families with kids in palliative care know they are cared for, and not managing alone.
