Five-year-old battling rare kidney disease - … Mother needs US$80,000 to get him specialised treatment in the US

Bright and bubbly, with an energetic personality, some days Nichale Boreland is just a normal child. But on other days, the five-year-old is writhing in excruciating, heartbreaking pain, to the point of having to be hospitalised on several occasions.

When he was nine months old, Nichale was diagnosed with Fanconi Syndrome - a rare disorder of the kidney tubes in which certain substances that are normally absorbed into the bloodstream by the kidneys are instead released into the urine.

The crippling illness has forced the child to put up a brave battle for all his young life, leaving his family feeling heartbroken and helpless.

Now hospitalised at the Bustamante Hospital for Children because of the debilitating conditions of the disease, his mother, Simonette McKenzie, is pleading for the public's assistance in raising US$80,000 to get Nichale to the Boston Children's Hospital in the United States for intensive medical care and specialised treatment.

McKenzie has already received an acceptance letter from the overseas hospital, but finding the funds for the treatment has proven to be an impossible task.

"Bustamante Hospital is doing their best in treating my son, as they have saved his life a lot of times," the distraught mother told The Star.

"Last week his heart stopped like three times but thankfully he is awake now and he is off the ventilator."

She continued, "Getting him to Boston is really costly and I would be appreciative of any help that I can get. I was told that my son's condition cannot be cured, but it can be treated so he can have close to a normal life as possible."

STARTED VOMITING

Sharing how the ordeal began, McKenzie, who hails from the parish of Clarendon, said she had a healthy pregnancy and delivered a bouncing baby boy on May 18, 2019.

However, when he was nine months old, he began vomiting, but she just thought he had contracted a virus.

"He was developing well until he was about nine months old. I then realised that he wasn't keeping down anything, and was dehydrated and wouldn't stop vomiting," the mother explained.

"First, I took him to church and the pastor prayed for him and after that he told me to take him to Bustamante Hospital for Children. At first the doctors there didn't know what was wrong with my son, so they were running a lot of tests.

"After a while they found out, and he was diagnosed with Fanconi Syndrome. When he was leaving the hospital, both his legs were fractured due to the Fanconi Syndrome."

Symptoms of the rare kidney disorder include fractures due to bone weakness, severe bone pain, excessive thirst and muscle weakness.

Children with Fanconi Syndrome usually have a short stature, are frail, have a low muscle tone, and have signs of florid rickets, such as frontal bossing, rosaries, leg bowing, and widening of the wrists, knees, and ankles.

"He spent most of his birthdays in the hospital, from his first to his fourth. This year he spent it at home, but he is currently in the ICU at the hospital," McKenzie told The Star.

"He is not doing bad now, but from ever since he has been in and out of hospital. His sodium and calcium level is all over the place. Sometimes he will complain of headaches and belly pain. There are times when he tries to stand with support but his legs will hurt."

UNABLE TO ATTEND SCHOOL

McKenzie said because of little Nichale's medical condition, he is unable to attend school, so she and her mother try their best to homeschool him.

"He is very intelligent and he speaks well. The only thing is that he is not walking," she said.

"He has not been able to go to school. He is constantly on medication, so I can't just sent him to any institution. I am trying to homeschool him and teach him what me and my mom can."

McKenzie said it pains her heart dearly whenever she thinks of what her son is enduring.

The stress has also taken a toll on her emotionally.

"I remember losing six jobs in a year, because he is always in the hospital and I have to stop from work. It has been draining for me. I break down a lot and sometimes I have suicidal thoughts, but I keep reminding myself that he didn't ask to be here," the distressed mother said.

"It has just been me with him from I was pregnant. There is no father around so it is really rough. It is not an easy road, but I have been holding on."