This post will not be about Emma but about Emma’s friend Albin. Albin’s full story is not ours to tell but we want to introduce this little amazing kid to our followers 🙂
We met Albin and his parents, Linn and Jerry, at neonatal in Lund where we shared room no 5. We came to know Albin as a real little fighter. We thought that Emma was small but Albin was even smaller :-), but he was born six weeks early. Albin was in a respiratory and had to endure a lot of treatment he did not like. Just like with Emma we could tell that he was in the right place with an amazing hospital staff.
Last week we met Linn, Jerry and Albin again when they moved from neonatal to our department 62. Albin had grown quite a lot and had actually passed Emma, but he is just as sweet and cute as ever <3. He still showed his fighting spirit and despite that he can’t make sounds from his mouth as he has a tracheostomy tube, he waves his arms and definitely shows what he wants.
Albin is suffering from a very rare disorder called Treacher Collins syndrome (TCS) characterized by craniofacial deformities. Compared to Emma’s mitochondria disease which is found in about 1 in 5000 births, TCS is even rarer and found in about 1 in 50 000 births.
“Why us…” is just one of the questions and thoughts that parents to a seriously ill child often ponder. It’s good for all of us out there to know that we are not alone, even though it can often feel that way… Getting to know an amazing family like Linn, Jerry and Albin really helps in this long and hard journey.
Cya soon Albin <3