Connie Baumann now works at RMHC Alberta – and has her own RMHC Alberta story. Connie kindly wrote down her experience to share. Please read their family story in Connie’s own words below:
“In 2018 my world was turned upside down. What started as a simple rash on my 8 years old’s body turned into a fight for his life. We were flown out without warning. At the time I was single mom of two boys. My youngest (6 years old) was stuck in the hospital with us as I did not have any family supports in Alberta.
We spent our first week in isolation. The doctors were working hard to try and figure out what was happening within my son’s body. He had blood vessels bursting from head to toe and his kidneys were shutting down. Saying we were absolutely terrified is an understatement.
I had been posting updates to my social media for my family. I received a private message from a woman. She stated she was a distant relative, and her daughter had a genetic condition that sounded similar to what my son was struggling with. I showed my son’s doctor the message. The doctors immediately had a direction to start investigating his illness. That was the key to figuring out what was happening.
My son was diagnosed with aHUS and is the second person in Canada with this specific diagnosis. The women that had sent me the message stated her daughter was willing to give all her medical records to my son’s doctors if it meant potentially helping someone. This was extremely helpful in identifying the genetic component. We were then told that there was a medication that could cure all his symptoms and health concerns, but it was the second most expensive drug in the world, and they had never heard of any benefits covering the cost. My son and I went public with his story in hopes of finding the supports we needed to get him the medication he so desperately needed. Our small community fundraised for the funds we needed and enough of the great folks in Medicine Hat spoke up, and we were able to get the funding needed to cover six months worth of medication.
During that time, we were able to get in to see the geneticist who was able to confirm exactly what strain of aHUS my son had. At that point we were able to move him to daily oral mediation instead of the bi-weekly infusions.
My son’s health had increased that the doctors were able to remove the tube he needed for dialysis, and he slowly gained strength until we were able to go home.
It was without a doubt the hardest thing myself and my sons have been through.
We went home on Dec 23rd 2018.
How was RMHC beneficial to us during that time?
Before RMHC we were living off skip the dishes and cafeteria food. My kids had not had any semblance of their “normal life”. My son was unable to get out of bed for over a week. My youngest was sleeping on a mat on the floor in the hospital room. I was surviving and not taking care of myself at all.
We had a referral in to the RMHC house in Calgary. Once we got the call my mother and father were able to come from BC for support. They stayed at the Ronald McDonald House. My youngest was able to sit on a couch for the first time in weeks. I had no idea how much my kids had been through because I was so focused on being an advocate for my child to ensure he was getting the right the supports.
When my parents arrived at the House, we all sobbed. The level of moral support from the other families and the support we received from the staff was beyond words. I hadn’t realized how much the boys missed normalcy.
Some of the simplest things meant the world to us. We were so relieved to have homemade food, a place for the boys to run and play and just be kids, Christmas crafts and so much love. The boys ran from the Christmas tree to the video game room, to the playhouse in the yard, and to find Sully and the elf on the shelf. I wept seeing my kids be kids. They were very excited to pick out a quilt that they knew were made with love and for them to keep. The Ronald McDonald House gave a place to breathe and feel normal.
When it was time to check out and go home, we were ready and nervous. We had been in the hospital for more than a month and I had not had any time to think about what our Christmas would look like due to being in survival mode. I was feeling like I had failed to provide my kids with Christmas (we were discharged Dec 23rd and on isolation when we returned home due to my kiddo not having an immune system) so going out shopping was not an option. When we were packed and walking out the door the RMHC staff asked us to wait as they had Christmas gifts for us. They provided us with a full Christmas and even included a couple gifts for me. Words cannot explain the impact that made. It has been six years since this all happened. When I ask my kids about the entire experience, they excitedly talk about RMHC and the ACH and all the fun they had. They remember staff making them feel welcome, they remember the details in the house that made it a home, they remember me being relaxed and happy, they only talk about the positive experiences they had. Whenever we eat at McDonald’s they always talk and bring up RMHC and thought it was so cool!
I am so extremely proud to say that I work at RMHC. Every day I get to help families through some of the toughest times they will experience. I get to ensure they have a clean and beautiful home away from home. I can truly understand how dark it can be and get to offer some light.
RMHC is more than a house. The staff are more that just staff and the volunteers are pure magic. We will never forget the incredible impact RMHC had on our family. I will always continue supporting those who need the support that I needed. We are all family here.”
Connie shared with us that her boys are doing beautifully these days, with her son “just like any other 14 year old”. They are now a family of five and giving back to those who have had to walk similar pediatric journeys. Thank you Connie and family for sharing your experience!
