By: Julie Hill
Rare is proud, rare is strong, and this is our story so far…
After many years of IVF, we had our first-born Isaac, who was born 13 weeks premature. But still I longed for another baby. We lost a baby in between and around the due date of this baby, I got pregnant with Logan naturally, against all odds. Fast forward to 34 weeks pregnant, and I gave birth 6 weeks premature to Logan. It was a difficult birth as he came out breeched. We stayed in hospital for a couple of days and then we were sent home. Logan weighed 4lb 7oz.
I was complete. I finally had 2 beautiful boys, which I had longed for and for so many years. Logan, as a baby, really struggled to gain weight, and he was very delayed in all his milestones. He didn’t sit up unaided until 13 months, and he finally walked at 20 months. When, he went for his 2-year checkup, it was identified that Logan was very delayed at his speech. So, from age 2, we had speech and language therapy involved. From there we got transferred to a Paediatrician, who said Logan had dysmorphic features. The Paediatrician sent us for chromosome and genetics testing. We all had to spit into a test tube for them to test our saliva, which they then grew in a science lab that took 18 months to get results. Logan by now was age 5 and we had spent years of knowing something wasn’t right, but not knowing what.
Finally, we had a diagnosis of Wiedemann-Steiner Syndrome. So now this explained why Logan didn’t speak till age 5 and half….he had never slept through the night…he had temper tantrums…he struggled to thrive…he struggled to gain weight…and he would be sick nearly every day. I’m so glad we never gave up trying to find out what was wrong with Logan because knowledge is power. We needed help to get Logan the help he needed at school. He started mainstream school with a full time one-to-one aide but even with this in place, they couldn’t bring Logan on educationally. We moved Logan to a special needs school age 9, where he finally fits in with his peers.
He is now 11. This September, he will be starting high school. Sadly, his education level is still that of a 5/6-year-old. Sadly, we feel Logan was let down by having to wait so long for a special needs school and unfortunately, he wasn’t there long before Covid-19 turned the world upside down. We don’t know what the future holds for Logan as there is so little understanding information regarding this syndrome. But one thing I do know is that he is strong and we are so proud to be his parents. From one proud WSS mother…this is our beautiful boy. Now age 11…he is my absolute world xx