Chai Blog: Dana

I’m Dana, the mother of a 4.5-year-old girl and 2.5-year-old boy. I’m writing, as a parent, to let you know what Chai Lifeline has done for my family.

At the age of 3 months my son had surgery for an inguinal hernia. The surgery went well and my son was sent home, but, as the day progressed, his swelling became worse. I took him to our local hospital. They were concerned with his swelling and levels and they quickly transported him to Sick Kids Hospital in Toronto. After emergency surgery and being placed in the PICU, the staff quickly realized that the trauma my son had experienced was not a result of the hernia surgery, but something more. This began our four week stay at Sick Kids.

By the end of the stay my son was diagnosed with Alagille Syndrome (ALGS). ALGS is a rare syndrome that affects 1/75,000 children. The syndrome can affect all major organs and interferes with the absorption of crucial vitamins for proper development and growth. My son was unable to absorb vitamin A, D, E and K.

My husband and I were extremely exhausted, and trying to spend as much time as we could with both our daughter and son, so a friend suggested that I get in contact with Chai Lifeline. Within 2.5 hours of an email being sent out, my cell rang. It was someone from Chai Lifeline calling to say they had a staff member at the hospital and could she pop in and say hi. Fifteen minutes later, a case manager had texted to let me know she would be visiting shortly.

The case manager’s name was Ronit. She entered my son’s room with a reassuring smile. She offered to hold my son and did so effortlessly, even with all his wires and low tone issues. Before she left she arranged for a volunteer to come spend some time with my son a couple of days later, so I could take my daughter to a Wiggles concert she was excited to attend. I didn’t know, at that moment, how much of an integral part of our lives Chai Lifeline would become.

Once we were discharged from hospital, Ronit came to visit us at our house with presents for both my children. She explained all the services Chai Lifeline had to offer, including a “Wow Gift.” A “Wow Gift” is a gift given to the sick child when first enrolled with the organization to make him/her feel special during the turbulent time of diagnosis and illness management. It could be anything the child wanted or needed. She also informed us about the Big Brother and Big Sister program in which a volunteer spends time with each child in the household. This provides the children an opportunity to feel special and gives the parents much needed respite. I was initially hesitant about using this service as my children were so young.

As my son got older and his illness progressed, our case manager changed. Dina was introduced into our lives and I realized it was time to ask for help. Dina would call regularly, checking in to see how everything was. My daughter was given an incredible big sister – Lindsay. They connected instantly and I felt at ease with the decision to have someone be with her.
With my daughter spending time with Lindsay, it was easier to spend time with my son, take him to appointments, organize his medications, and connect with other parents experiencing similar struggles.

Life was chaotic and stressful, but I needed to establish some semblance of normalcy for my children. We started to participate in some of the family activities that Chai Lifeline offered – such as trips to the local amusement park and indoor playgrounds. These are outings and experiences we would not otherwise have been able to do with both children given our son’s sensitivity to germs and low energy levels. Having Chai Lifeline include us in these events enabled us to participate for as long or as little as we wanted without any stress.

At one event, I met some of the organization’s amazing staff. I happened to mention, to one of the staff members, how lucky we were to find such an incredible volunteer. I will never forget her response: “All our volunteers are just as incredible”. And you know what? She was absolutely right! Every volunteer who has come to help us has been outstanding and thoughtful.

In November of 2016 my husband and I were told that my son needed to be listed for a liver transplant. Throughout the multiple tests and visits to the hospital, Chai Lifeline was right beside us, offering support in any way we needed. I remember one specific moment when my son needed an emergency infusion and Sarah came to visit us and stayed with us, keeping my son entertained, providing me with food and calming my nerves for a good hour. The selflessness and kindheartedness that the individuals of Chai Lifeline possess is unparalleled.

Throughout the testing and transplant, Chai Lifeline was always there making sure we had supports in place at home for my daughter as well as at the hospital overnight for my son. When the volunteer stayed overnight with my son, my husband and I were able to go home to my daughter and give her the quality time that she needed.

Knowing that there is an organization that will stand by you, and provide you with ongoing support is such a comforting feeling. It’s nice to know we don’t have to go through this alone. We are so grateful for everything Chai Lifeline does, and continues to do for our family!

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