Yesterday a family who has a son with A-T (www.atcp.org) found out that their infant daughter also has it. Many of us have played genetic roulette without even knowing it. Genes mutate, and there is no way we can know all the mutations we carry. In the case of A-T, all it takes is finding that one other person who carries the recessive gene, and you have a 25% chance with every pregnancy that your child will have it. Most children aren’t diagnosed until they begin to walk, or start having frequent infections. My son was almost 3 when he was diagnosed. He had an older brother (2 yrs older) and a sister about 9 months old when we found out. There are families who have three or four children with this condition. Imagine sitting in a physician’s office, often far from home, and being told your child will be in a wheelchair by the age of 10, and most likely die in his/her teens. (more often now the kids live into their twenties)
Life-shattering. That’s what it was for me. Totally unexpected with few, if any, upbeat reassurances from the specialists. This family is starting a journey they never thought they would be on. All of us who have special kids, regardless of diagnosis, have to learn a new vocabulary, a new road map (is Grandma’s house accessible or inaccessible for wheelchairs, is the bathroom accessible?) and summon up a cheerful persona with great strength to get your child(ren) through all the procedures, needle sticks, machines, medicines, and losses. You have entered a strange, new world that you and your child will have to traverse together. Those of us who have gone through heart-stopping news like this, whether it is our own diagnosis or someone we love, we will share in your grief as we all walk this strange new path together. Namaste’, Blessings and Prayers to all who are living with the grief of a limitation in your own life, or the life of someone you know and love.