A young man whom medical experts predict will not live past 20 years old due to a rare medical condition has left Samoa for the trip of a lifetime.
Thanks to a Good Samaritan couple who wish to remain anonymous, 18-year-old Sinaumea Sofara, of Salepoua’e Saleimoa, will not die wondering.
More importantly, due to the kindness of the anonymous couple who have spent well over $20,000 for the trip, Sinaumea, his parents, Vaiala and Arieta and his two sisters, Hetta and Luisa, will have the time of their lives in New Zealand for the next three weeks.
The all expenses paid trip will allow them to spend time with their families and visit the Auckland Zoo, a place Sinaumea has been dreaming of.
“I can’t wait to see New Zealand, I’ve heard so much about it,” he told the Samoa Observer at the Faleolo International Airport with his ticket in hand and a big smile.
“I’ve always dreamt of going to New Zealand. Today my dream has come true. I want to go to the Zoo and eat McDonald’s. Thank you God.”
Sinaumea has been diagnosed with a terminal illness called Duchenne muscular dystrophy (D.M.D). The condition is a rare recessive X-linked form of muscular dystrophy, affecting around 1 in 3,600 boys, which results in muscle degeneration and premature death.
The 18-year-old has already lost two brothers due to the condition.
They both died when they were 17. The doctors don’t expect Sinaumea to live past 20 years.
For his parents, they only had tears of joy on Sunday night, prior to boarding the Virgin Samoa flight to Auckland.
“God hasn’t forgotten Sinaumea,” said Vaiala.
“He has answered Sinaumea’s prayers and it is him who gives us the opportunity to visit New Zealand. I want to say thank you to Loto Taumafai especially the Good Samaritan.
“I wish I could tell you their names but I know God knows who they are.”
Principal of Loto Taumafai, Lagi Natanielu, said she is extremely pleased for the Sofara family.
“We just want to give God praise for these great Samaritans,” she said. “Psalms 23 says that … you anoint my head with oil and my cup overflows.
“I also want to acknowledge the support of our C.E.O, Leta’a Devoe to children with disabilities and all our supporters. We can only what do we can and God will do the rest.”
A representative from Loto Taumafai’s Society Community Base Rehabilitation said Sinaumea had a specific wish.
“It was last year that he told his mother that he would love to see his uncle in New Zealand. Then two days later, we visited the family because our work is to go out there and fix his wheel chair and do his physiotherapy as usual.
“During this particular trip, we had one guy that had come along with us and when he heard about the family and Sinaumea’s dream, he had asked Sinaumea to tell him the country of the world he wanted to see.
“He asked Sinaumea if he wanted to go to Disneyland but Sinaumea responded ‘o fea le ga mea?”
“Sinaumea finally whispered that he wanted to visit New Zealand with his parents and two sisters to see his uncle.”
The couple from Australia returned home and they have kept their promise to Sinaumea.
“While in New Zealand, he’ll turn 19 on 8th of April. This story is about amazing people who gave up a lot for others.”
Information about D.M.D from Wikipedia
Symptoms usually appear in boys between the ages of 2 and 3 and may be visible in early infancy.
Even though symptoms do not appear until early infancy, laboratory testing can identify children who carry the active mutation at birth.
Progressive proximal muscle weakness of the legs and pelvis associated with loss of muscle mass is observed first. Eventually this weakness spreads to the arms, neck, and other areas. Early signs may include pseudohypertrophy (enlargement of calf and deltoid muscles), low endurance, and difficulties in standing without help or an inability to walk up stairs.
As the condition progresses, muscle tissue experiences wasting and is eventually replaced by fat and fibrotic tissue (fibrosis). By age 10, braces may be required to aid in walking but most patients are wheelchair dependent by age 12.
Later symptoms may include abnormal bone development that lead to skeletal deformities, including curvature of the spine. Due to progressive deterioration of muscle, loss of movement occurs, eventually leading to paralysis.
Intellectual impairment may or may not be present but if present, does not progressively worsen as the child ages. The average life expectancy for individuals afflicted with DMD is around 25.