Growing into the challenge of Prader-Willi syndrome

Above: Lee-Ann and Simone Callendar, photographed at their Chaguanas home. Makeup by Shenelle Escayg, photographs by Mark Lyndersay.

Pentecost day, 31st May 2009, my precious angel Lee-Ann was born. What a gift from God on such a memorable day. However, eyebrows rose when Lee-Ann was unable to latch on to my breast to breastfeed. The bond that is formed between a mother and child during that act was never experienced. Lee-Ann became an outpatient to the neonatal clinic for a few weeks, for observation purposes, before being released. She had a weak cry which caused a problem especially at night to know when she was hungry. As such, I did away with the crib and allowed her to sleep with me on my bed.

At three months old, she was playing with her rattle, holding newspapers and mimicking her grandfather. A seemingly typical infant. However, at the age of nine months, we became concerned about her development as she started regressing, as a result she started seeing a Developmental specialist. In 2010, at fourteen months old, we flew with her to the United Kingdom where my sister who worked within the hospital system, arranged a private medical appointment for us to run various tests to get to the bottom of why Lee-Ann regressed. All results came back normal and with no answers, we returned home to Trinidad.

Over the years Lee-Ann had suffered from many ailments such as floppiness as a baby, short stature, small hands and feet, squinting of the eyes, speech-language and motor developmental delay, with mild to moderate learning difficulties.

Snoring/breathing problems at night while asleep, leading to periods where breathing stops for a few seconds, known as sleep apnea. The development of obesity due to excess fat and poor muscle development, behavioural problems with temper tantrums, skin-picking and stubbornness and pre-diabetes mellitus which was assisted by the drug metformin for roughly two to three months.

One by one we overcame the hurdles as they came along. We did numerous physiotherapies as Lee-Ann was not walking on her own although she would hold-on to objects and stand. She started walking at three and a half years old, and we were grateful to her then day care owner, who became like family over time, for working and praying with her daily.

Delayed speech was another hurdle. Our family doctor, Dr. Rambally, had been instrumental in getting us to see the best physicians in different fields and given this hurdle she pointed us in the direction of Ms. Alicia Bharath, a speech-language pathologist.

Lee-Ann started working with Ms. Bharath from the age of 3 years old. Ms. Bharath did not only teach speech; she taught Lee-Ann how to colour within the lines, how to differentiate different shapes through playful activities and many more. During one of Lee-Ann’s sessions the word Prader-Willi syndrome was introduced to us by Ms. Bharath, due to her experience and training. The one test that was missed back in 2010.

Lee-Ann has been to physiotherapy, developmental specialists, speech therapy and the latest (briefly) occupational therapy. All of this was done out of pocket as the waiting list back in 2009 at the Eric Williams Medical Sciences Complex was long, especially for the developmental specialist. Being the proactive person that I am, I was not letting that deter me from providing all the opportunities required for Lee-Ann to be the best that she could be.

Prader-Willi syndrome? I had never heard about this rare condition. In February 2014 at the age of 4, Lee-Ann was genetically tested and diagnosed with this rare and complex genetic disorder, through Methylation analysis. It was such a relief to finally know what my sweet innocent angel had, which placed me in a better position to deal with all her needs.

The Internet can be your friend or your worst enemy but, in this case, it became my safe haven. I did countless research on the syndrome and what I found was so scary – an insatiable appetite! Can you imagine never feeling full or satisfied after having a meal? Imagine you have the capability to eat yourself to death at every meal if ever left unsupervised around food?

Childhood obesity, seeking food from everywhere, even the trash, this hit me like a ton of bricks. Prayer-Willi syndrome also has no cure and that crushed me. I cried myself to sleep numerous nights, questioning why me, why did God make my child this way? How can I help her to live a normal life? Then I remembered that God never gives you more than you can bear, and I should be honoured that I was chosen to be the caretaker of his special angel.

One day, while scrolling through Facebook, her dad came across a parent support group for parents and caregivers with children and adults who live with Prader-Willi syndrome. The timing couldn’t have been better. God works in mysterious ways. I learnt a lot from those parents.

At age five when the time for enrollment into a school came, I wanted nothing more than for her to have a free opportunity at an education. However, I was worried about sending her to a mainstream/government school and I must say my worries got the better of me when I thought of the level of bullying and peer pressure in our nation’s schools.

I read many articles and stories about how difficult it was for other children with special needs to access the education system and I decided to not bother to attempt it. I was so fearful that my child would have been bullied and labelled by people who did not understand her. Speech delay is a major part of the syndrome which we are still working on, especially in clearing up her articulation with certain words through speech therapy and vocal training.

We checked out a few private schools in the central area and decided upon one, did a one-day assessment and she was accepted. We were so elated but that went suddenly because by the second day of school I got a call stating that the principal wanted to see me and not to bring her in that day. Fees were already paid; uniform bought, then this.

She was rejected due to frequent use of the restroom and requesting the teacher’s assistance. Their suggestion was a one on one aide at an additional monthly fee coming close to their term fees. We refused. Everything was disclosed about her syndrome, a one-day assessment done, and no discussion of an aide was communicated.

But God had a plan. Fate had it that Ms. Bharath, her speech language pathologist, opened a school, and that is where she attends to date. Her teacher teaches life skills as a tool and technique to equip her for the world. She is also enrolled in lessons among typical children. Her tutor challenges her as she believes she’s capable of doing so much more.

I have learned from the PWS Association of the United Kingdom, that growth hormone (GH) therapy is recommended for growth failure in children with Prader -Willi syndrome. We were able to access this treatment through her Endocrinologist at the Eric Williams Medical Science Complex Endocrinology outpatient clinic.

My daughter has been benefiting from this form of treatment since December 2014. Since then we have seen her health improve by leaps and bounds in the following ways; her physical development, she now has increased energy and is no longer lethargic, her respiratory function has improved tremendously due to the strengthening of her respiratory muscles. She no longer snores nor has sleep-apnea.

Her strength and independence in everyday tasks; such as climbing stairs and grooming herself, which may seem like small feats to many, but for a parent of a child with special needs, is a monumental achievement. She loves to exercise. However, her weight remains our biggest challenge to date. In this area I believe I have regrettably failed her as at times she partakes in snacks and even birthday celebrations.

Lee-Ann loves to dance and exercise, so we joined Zumba classes with Zumba instructors Nadia and Andy where we killed two birds with one stone. In May of 2017 Nadia used her platform to raise awareness about Prader-Willi syndrome at their Chaguanas branch, where everyone came out wearing orange in support of Lee-Ann.

This was done at all her zumba venues for the month. Orange is the colour worn for Prader-Willi international day which is celebrated in May of each year. Everyone who has encountered Lee-Ann came to love her. The mother in me would grasp at any opportunity to raise awareness for Prader-Willi Syndrome, because it is not commonly known in our country or world-wide.

Lee-Ann has also been dancing with the Candice Clarke Academy of Dance for about five years. May 2019 was her third dance production. It was even more memorable as the month of May was Prader-Willi syndrome awareness month, and for the first time, she did a solo piece (a daughter/mother) dance with Lee-Ann as the lead dancer. Lee-Ann has come a long way and continues to break barriers. Her dance teacher has never labelled her, nor limits her from experiencing or partaking in any genre of dance she showcases at the Academy.

Lee-Ann is now 10. I have always believed that my daughter would have a bright future, therefore, I never denied her from being involved in activities such as dance, zumba, vocal training, and occasional modelling at church events. We live by the motto that “although she has Prader-Willi syndrome, Prader-Willi syndrome does not define the person she is nor can become.”

Sponsors: Dale McLeod, Jacqueline Scott, Starlite Collection, Sacha Makeup, JB Fernandez Memorial Trust II, Christopher Rodrigues, John Marchan, Portia De Clou, Patrick Grell Sr.