Alexander From Belgium
My name is Tiny, and my husband is Tomas. We have two kids, Alexander (6) and Helena (4). Alexander was diagnosed at the age of 4 with homocystinuria, almost 2 years ago now. From a carefree life of eating everything, to a sudden severe disease and very fearful times…Our world has completely changed.
Alexander was walking late, crying a lot at school, he was developing a bit late; But nothing to really worry about, doctors said. Just a late bloomer. He went to a great physiotherapist since he was about 3 years old. One appointment she said, “I think there is something wrong with his eyes.” He was very insecure; his balance was not good. Sometimes he was walking a bit funny.
We went to the eye doctor and soon they let us know that he needed glasses, and that there was something wrong. He had lens dislocation in both eyes, so then we knew there was something bigger going on. The waiting time between this eye appointment and the blood and urine tests from the UZ hospital was terrifying. When we finally got the phone call, I heard the name ‘homocystinuria’ for the first time, and I asked the doctor to repeat it three times. Having never heard of it, it is so rare, 1 in 200,000 births.
My husband and I started diving into this diet, checking so many products in stores for hours, only to get even more disappointed and concerned. Luckily, in the beginning, I had found another patient, Matthias. He is 41 years old, and he explained a bit about how his life and diet was going, this gave me a lot of comfort. A few months later his homocysteine and methionine levels were stable. We were so happy, we could celebrate!
But then my grieving started… How did this all happen? Why didn’t we notice it sooner? Why wasn’t he tested for HCU in the newborn screening in Belgium? Why us, why our lovely boy? What will his future look like? Will he always stick to his diet? So many worries, so many questions. Still today, sometimes I struggle with it. After hearing some testimonies of patients who were living a nice and normal life, patients who were achieving great things, it made me a bit relieved.
Luckily, Alexander was the best, sweetest, most understanding child! He never cried during blood tests, he is always so brave! He never complained about his diet, and we also try to make his food fun, and give him choices.
He is doing great, he became so happy, outgoing, joyful, extravert, even bossy at times! Since his diet and medication, he truly became a different child. He is doing so well, and despite the grieving periods and sadness that still comes up sometimes, we try to stay optimistic, make jokes and give him a completely normal life, with many varieties of food.
My husband and I now bake and try recipes with all our hearts, with lots of love. Food has a new dimension now in our family. But it also connects us, it is now a part of us, and I wouldn’t change anything about Alexander if I could.
He is 6 now, on diet for only 2 years, and we are very curious to see him develop in this amazing young man, who is always smiling and making the best of everything. Alexander, we are so proud of you, even though life gave our family this hard disease, we make the best of every day, and we support each other with infinite love.
People who want to talk to us, or need some support: you may always contact me on socials: @tinydevidts
