Birthdays are blessings, but for little Samir Lutchmipersad, they are miracles. He suffers from a rare debilitating illness, and each new year his mother, Anita, is reminded of his resilience and will to shine on.
However, when he celebrated his 11th birthday yesterday, her fears deepened that the light in her life may soon fade. Shortly after Samir’s birth, Anita noticed some growth irregularities in her baby boy.
He was diagnosed with Metachromatic Leukodystrophy (MLD) a rare, genetic, degenerative, neurometabolic disorder that affects approximately one in 40,000 people (primarily children) worldwide. It is an inherited disease, but parents are typically not affected. At present, it is a disease for which there is no cure.
When Samir is not being clutched and cradled in his mother’s arms, he spends his time with close relatives at his family’s South Oropouche home. When Guardian Media Limited visited on Thursday, final touches were being put on the home for a particularly special birthday celebration, as Anita believes this may be the last she shares with her son who has been defying the odds for years.
“The doctors told us that he would live to a period of six years as he would lose all his bodily functions, his ability to walk, stand, sit and lay down. So since 11 months it started with his eyes, it became crossed, he started to get seizures, from that it went to his limbs until his total body lost all mobility,” he said.
As 11 birthday cake candles ushered in another chapter in Samir’s triumphant battle over his illness yesterday, his mother felt a light had dimmed.
She said: “June this year Samir’s disease has taken its final toll to his body. It’s been really really tough. Every year has had different changes, but this one is where Samir reach his final stage where his kidney stopped functioning and he had a relapse.”
Samir’s prognosis may be bleak, but for years his smile has warmed his mother’s heart.
“I’m doing a Ramayan (Hindu prayer service) tonight. I wouldn’t be able to see him get married, I never see him go to school, so this is my final give away to him. He really fight many years and he was very supportive as a brother and a son, he built me and made me into somebody so strong but it really is hard to watch your only son like this, but he is amazing, he is my angel,” Anita said.
While birthday wishes are often filled with life, love and laughter, Anita’s is heartbreaking.
“I wish that when he does cross that God will open and receive this angel. He did a wonderful job, he came in this family to be the strong one and he did.”
Anita hopes one day to establish a support group for families affected by the rare illness (MLD), she is also urging parents to never give up on their child despite whatever misfortune they face.