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Preparing for kindergarten in a family is usually a big deal. But, when you have a child with a rare disease such as Alagille syndrome (ALGS), entering kindergarten has many different aspects and challenges.

I’m preparing to send my son to the big K in about a month and my mom heart is sad. I’m experiencing a range of feelings. Among them are emotions of joy that we made it to this milestone, and sadness as we prepare to separate ways for 7 hours a day, because we have been together so much through this journey of life so far. 

Also, I worry for him and don’t know exactly how ALGS, his liver transplant, or his newly diagnosed alopecia will affect him emotionally or mentally in this new environment. I also carry a heavy weight knowing my child is about to celebrate a huge milestone; the child whose liver was donated to save my son’s life will not get this moment with his family.

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I know there’s a lot to prepare for to ensure he has the best experience in school. It is important to make sure the educational staff, including his teacher, are aware of his situation. And I’ve made sure they know they are now an important part of the team to make sure we keep Jackson safe. They must communicate with me if there is an outbreak of illness or viruses in his classroom so I can make a decision if he should stay home for a few days, or he can take the risk and go to school.

Read about HCP resources for ALGS

It’s also important to let the other families know that there is an immune-compromised child in the class so hopefully, they will be more mindful when it comes to sending their kids who may be sick to school. There are many times he will get to school late because we must get lab work done. And I know there will be days missed due to the travel and number of specialist appointments that we must complete.

It’s also a priority for the educational staff to help educate the other kids on why Jackson may be different. First, he has several missing teeth and lots of silver crowns in his mouth, which is not normal for other kids his age. It interferes with his speech and makes him hard to understand. He also has scars on his body from the transplant, and leftover skin discoloring from the xanthomas that could make some kids see differences.

I have already spoken with the school, and they are going to keep an eye on his educational journey for the first month and then have a meeting with us to discuss if any extra resources are needed for Jackson.

All these things above make going into kindergarten for us quite an experience, and an unknown since we didn’t have to deal with these things with my older kids. I think most of all I am saddened about being away from my son.  We have been inseparable since he was born, and we have a different bond because of this medical journey we’ve been on. I am excited to see him thrive but sad to see him go.