“We cannot even imagine where we’d be if Roger Neilson House wasn’t here. It’s not only a place, it’s a family for us…we will never be able to find the words to thank enough everyone involved with Roger Neilson Children’s Hospice.”
Honoring one of the first children at Roger Neilson Children’s Hospice
‘We were living every day and we were dying every day. That was our life’
Osayd’s family have thousands of photographs throughout their home and countless loving memories. “He was a mummy’s boy,” says his mom.
The Abdali family’s new life full of pain and harsh realities started about a week after Osayd’s birth. He was born a perfectly normal child, their first-born baby, with lots of hopes and dreams for his future.
‘He taught us many lessons of life; he made us strong’
Everything changed when he had his first seizure when he was only 10 days old. Osayd had an undiagnosed neurodegenerative disorder and his neurologist informed the family that children who experienced this condition would not survive past the age of four or five years old. He would have seizures all his life, with his parents estimating that 80 percent of his moments were in a seizure.
Among the first children and families supported by Roger Neilson Children’s Hospice
Osayd would never see, never walk and never talk. From the time he was born, his parents were told that he needed palliative care. “It was so hard for us without any family members and at that time there was no such place like Roger Neilson Children’s Hospice,” said Osayd’s mom. It would be two years before Roger Neilson Children’s Hospice opened its doors and Osayd became one of the first children to enter its care.
“Roger Neilson Children’s Hospice was with us at every moment, whenever we needed them; they heard our unsaid words,” says Osayd’s dad.
Respite care when families need it most
“It’s 24 hours a day, we were so overwhelmed.” Through respite care, Roger Neilson Children’s Hospice was able to give Osayd’s parents a much-needed break from his around-the-clock care at home — a regimen overwhelming even for his mother, despite the fact she is a trained doctor.
‘Surrounded by eyes that were crying with us, hands which were ready to wipe our tears and words that gave us strength’
When Osayd’s condition worsened, the family chose to turn to Roger Neilson Children’s Hospice for end-of-life care. “We knew that this journey is the hardest part, and it was a necessity. We knew that there are people who are with us. That we can count on them. The last ten days of Osayd’s life were difficult, but it was peaceful. Fortunately, due to Roger Neilson Children’s Hospice, we were able to spend the most difficult time of Osayd’s journey in peace, surrounded by eyes that were crying with us, hands which were ready to wipe our tears and words that gave us strength in the most excruciating painful moment of any parent’s life… we gave Osayd every second of our life. He chose to go in our arms…[at Roger Neilson Children’s Hospice].”
‘The bereavement group provided us peace and also helped us in grieving’
Following Osayd’s death in January 2011, his family’s relationship with Roger Neilson Children’s Hospice continued. A couple of months after Osayd’s death, the family joined the bereavement support group. “We were not sure how we were going to cope after losing Osayd. Visiting Roger Neilson Children’s Hospice, meeting with the social worker and other staff and joining the bereavement group provided us peace and also helped us in grieving,” says Osayd’s dad.
Osayd’s mom adds, “Even though grieving the loss of a child is a never‐ending process, the group provided us a safe environment where we could share our feelings, thoughts and emotions. It gave us comfort and helped finding our new normal by listening and sharing with other similar parents.”
“We cannot even imagine where we’d be if Roger Neilson Children’s Hospice wasn’t here. It’s not only a place, it’s a family, for us…we will never be able to find the words to thank enough everyone involved with Roger Neilson House.”
