Cape Town - Fifteen years ago, on August 11, and at 36-and-a-half weeks, Abigail Brookes was born at Constantiaberg Mediclinic.
But immediately, Abigail stopped breathing. The lack of oxygen damaged the bottom right hand side of her brain, impacting on her future learning abilities and health.
Abigai, now 15, has battled various illnesses since birth and is still prone to infection almost monthly.
She crawled late, walked late and talked late.
According to her mother, Barbara, she was a “floppy baby” who required assistance to sit up until she was well over a year old.
Abigail was diagnosed as chronic asthmatic when she was nine months old and was hospitalised with pneumonia every three weeks in her early childhood.
“She had extremely low muscle tone and when she started walking at two years old, she wore splints to aid her walking.”
Abigail has been to five different schools because she struggled to find one that suited her needs.
Now she attends Vista Nova Primary school and is in the multi-grade class. She has also struggled with social interaction.
“I always struggled to make friends because they did not understand me and that really hurt me,” Abigail said, sitting close to her brother and mother.
Her childhood had been spent trying to determine what was wrong with her.
Three years ago, she was diagnosed with Marfan syndrome.
“Receiving her diagnosis was a relief because for 12 years we left no stone unturned and finally we had some answers.
“Finally we could understand what to expect of her and why,” Brookes said.
Marfan syndrome is a disorder that affects the connective tissue which holds all the body’s cells and organs together.
Because connective tissue is found throughout the body, Marfan affects many different parts of the body, including the heart, lungs, eyes, skeletal and nervous systems. Abigail’s heart has been affected and she has an escalated heart rate.
Her skeletal system has also been affected and, as a result, she suffers from a mild form of scoliosis and flat feet.
“She had surgery on her feet in 2013 to correct the flat feet and in so doing assist in the prevention of the worsening of her scoliosis. Because of the weak connective tissue she is prone to bunions and this makes wearing shoes an uncomfortable experience for her.”
Her bunions returned and she is now scheduled for surgery on Wednesday to fuse the bones in her feet and, hopefully, prevent the bones from growing skew.
“I am very anxious and relieved about her next operation because she won’t have to stress about her feet anymore.
“I have mixed emotions about her journey because I had to battle acceptance, frustration and seeing my daughter go through excruciating pain,” said her father, Shane.
He said they often felt hopeless, but said her strength motivated them as parents.
Abigail’s lungs are weak and she is prone to chest infection and pneumonia.
She is a shy and sensitive but loving and nurturing child who longs to be carefree and not be restricted.
She has a passion for children and animals and hopes to be either a child minder or a veterinarian one day, her parents said.
Jamie, Abigail’s younger brother, admitted while they often argued, he still became sad when he saw his sister in pain.
Her therapy sessions cost R770 per hour, with an additional psychiatrist’s fee of R900 per hour.
Her medical aid savings for the year were depleted in February and, therefore, her parents had to pay for further consultation and medication themselves.
Her medical costs vary from year to year depending on her health, but range in the region of R20 000 to R70 000 a year.
Concerts to raise funds for Abigail’s continued treatment are organised annually by Ann Siroky and Jillian Alexander, friends of the family who attend the same church.
The next concerts are scheduled for November 9, 11 and 13 at the Artscape.
* For more information, contact Siroky on 072 916 3331, Alexander on 083 715 0676, or Barbara on 074 197 7151.
Cape Argus