In 1986, I had twin daughters Kirsten and Kaelen. At just 9 days old, Kaelen died from a complex heart condition. She was not tested for ARS at the time, but our geneticist thinks after reading her post-mortem report, it’s highly probable her heart condition was due to the Foxc1 gene mutation.
Kirsten was diagnosed at 5 weeks old with ARS. She suffers in a very similar way to me; headaches and sore joints. Her pressures have been good since birth and has not had an issue with glaucoma. At 34, she is on the waiting list for a hip replacement due to hip dysplasia. She also has enlarged ventricles on the brain and suffers a lot of headaches and migraines. She had a very slight squint which was rectified with surgery. Kirsten has required glasses from a young age.
Megan and Robbie
In 1993, I had another set of twins Megan and Robbie. Megan was diagnosed with ARS and Foxc1 gene mutation. She has worn glasses and contacts from a young age and had a slight squint, but didn’t require surgery. Her pressures have been good to this point. While she does have a lot of migraines she has not had issues with joint pain.
Robbie does not have ARS and has very good eyesight. He had a very slight squint but did not require surgery to correct it.
TOM
My Dad, sadly now deceased, was diagnosed in 1957 when he was 35-years-old. Until that point, he had no idea he had anything wrong, other than a slight squint and was needing glasses. When he was in his 40’s he began getting migraines and developed vascular dementia when he was in his 70’s. He never required drops for high eye pressures.
