Darragh Andrews is a 24-year-old para-athlete who lives in Belfast, Northern Ireland in the United Kingdom. Para-athletics is the sport of athletics practiced by people with a disability as a parasport. Darragh (pronounced Da-Ra) was recently diagnosed with Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS).
Carrie Monnier, President of The NR2F1 Foundation, interviewed Darragh over Zoom, about her journey as a para-athlete and the life-changing diagnosis of BBSOAS. Here is the content of that interview.
When Darragh was eighteen months old, she was diagnosed with speech delay, developmental delay, sensory integration disorder, nystagmus and optic hypoplasia. Makaton sign language (which uses signs together with speech and symbols) was her first mode of communication and she started talking at about 5 or 6 years old.
Darragh says she began her journey in competitive sports when she joined the local Special Olympics Ireland club Newtownabbey Racers in her town as a young girl. She was eventually drawn to sprinting and long-jump. Years later, she still remains active in the Special Olympics Ireland club Newtownabbey Racers and volunteers once a week at her club where it all started for her. She says she enjoys encouraging and mentoring young girls like herself.
When I (Carlie) asked Darragh what inspired her to take her sport to the next level, she said it was her good friend James, a fellow athlete in the same club and now a para-athlete mid-distance runner. She and James met when she was 18 years old and they soon became friends. In 2017, Darragh went to London to watch James compete in the Para World Championships. She met one of the top coaches at the games who encouraged her to work on getting her paperwork together to see if she was eligible to compete in para-athletics.
Competing as a para-athlete
Fast-forward and a lot of paperwork later, Darragh was eligible to compete as a para-athlete under the classification of Learning Disability. She is only one of four women in Northern Ireland who are classified to participate in the para-athletics. Her events include the 100- and 200-meter dash and the long-jump. Currently, her personal best is 3.67 meters in the long-jump, 35.08 seconds in the 200-meter dash, and 16.33 seconds in the 100-meter dash.
During the competitive season from April to August she trains 5 times a week with coaches. I asked if she had to follow a strict diet or eat particular foods during this time. Darragh said, “I don’t eat rubbish!”. Well, that makes sense to me and I think pretty much sums it up! During the off-season she continues to train on her own and participates in group training every Saturday morning.
When I asked Darragh about when she was diagnosed with BBSOAS, she immediately responded with July 20, 2022. She says she found it interesting to read about BBSOAS and that many patients have an excellent memory because she says she has a great memory as well, especially with dates.
Receiving a rare diagnosis as a patient and/or caregiver can be a tumultuous time and I asked Darragh if she was willing to share how it felt that day. She doesn’t hesitate to say that she was actually happy. She was happy to finally have answers to questions that she and her family had spent 24 years asking. In terms of being a Paralympian, she is also happy because now she can submit new medical evidence to the British athletics or Paralympics Ireland to determine if she is eligible for a physical disability classification. This new classification is crucial in terms of gaining more funding and sponsorship along with a higher ranking.
The diagnosis might also explain the nonepileptic seizures she began having in 2019. About 50% of those with BBSOAS experience(d) infantile spasms and/or seizures. Darragh describes her first seizure as terribly emotional and that she didn’t feel safe. She says she couldn’t hear well and what she could hear sounded really far away, like she was at one end of a tunnel and everyone else was at the other end. She also lost the ability to speak and lost her balance, unable to stand. Her seizures tend to last anywhere from 10 minutes to 30 minutes at a time. It has been 6 months since she has had an episode.
Since visual impairment and cortical/cerebral visual impairment also affects nearly all of those diagnosed with BBSOAS, I asked Darragh about her vision. She says she has a terrible time with depth perception and crowded environments. She is unable to watch television and make sense of most of the images because of the clutter. As a parent of a non-verbal child with CVI, I was fascinated to hear this from someone who can describe what it is like. Outside of vision, Darragh also shared that she has trouble staying asleep. Her mom is working on getting her a prescription for Melatonin (it is considered an under-the-counter drug in Ireland).
Darragh is the youngest of four siblings. She has one brother, 28 years old and two sisters, 29 years and 27 years old. I had the chance to briefly meet her mom, Elanie and her grandmother. Sherlock Holmes also made an appearance over Zoom. Not the detective but a 19-month-old Basset Hound recently adopted from the short-lived life of a show dog. Unlike Darragh, he apparently didn’t care for the life of a competitor and walked off the stage in the middle of his last show!
It was truly an honor to speak with such a resolute and strong young woman. I will never forget the day I received Darragh’s first email via the NR2F1 Foundation website: “My determination kept me active and fit but there have been some bumps along the way. It hasn’t been easy but I have met some amazing people in the journey. I’m so thankful for genetic testing… I hope to inspire others with my story.”
Carlie is the President of the Board of Directors for the NR2F1 Foundation, a registered 501(c)(3) non-profit organization dedicated to those living with rare mutations on the Nr2f1 gene.
With a B.S. in Special Education and a M.S. in Counseling, Carlie has worked at EPU Children’s Center as a Resource Specialist serving parents of children living with disabilities and then directed a parent leadership group for disability advocacy through storytelling and public speaking.
Carlie lives with her husband Jeff and their two daughters, one of whom has the rare Nr2f1 gene mutation, in Royal Oak, Michigan. She wants all Nr2f1 families whose lives have changed dramatically to know they are not alone.