Kimberly’s Story (ZSD)
My name is Marla. My husband, Chris, and I have been married for 9 ½ years. Our family consists of 3 little girls ranging in age from 17 months up to 7 years. Our youngest, Kimberly, was born August 27, 2023.
I had a completely normal pregnancy and birth. When Kimberly was about a week old, my midwife came to do the heelprick for newborn screening. After she left (and Kimmy stopped crying), I didn’t think about it again. Several days later, we had a phone call from Jodi saying Kimmy’s newborn screen came back “abnormal.” I can still remember the sinking feeling that came over me. I wasn’t sure what “abnormal” meant, but I knew it wasn’t good. Jodi asked us to come to the clinic the following day, and so began our journey with the Community Health Clinic.
When we walked into the clinic that first time we were quite overwhelmed and a little scared. We met a lot of the staff, although I didn’t remember very many names the next day. Over the next week we went back to the clinic several times, where we would learn that our little Kimmy had a genetic disorder called Zellweger Spectrum Disorder, or ZSD.
We got to know the staff much better during following visits, from Karen and Brandi at the front desk, who are always so pleasant to talk to on the phone or when we walk in the clinic doors, to Miranda and Lori who do Kimmy’s blood draws -a most unpleasant experience for everybody involved. These two ladies remain optimistic and focus throughout the entire ordeal, even if they have a hard time getting blood from Kimmy’s tiny veins. (Kimmy was only 2 weeks old for that first draw.) And there were always extra hands available if they needed assistance.
There is Pam, who takes care of scheduling for appointments outside of the clinic and fills out pages and pages of application and assorted paperwork. Pam even came out to our house several times to get signatures, pick up papers that needed to be faxed or just to look at something I had received through the mail and needed help understanding, saving us numerous trips to the clinic.
Jodi, too, has been an absolute pleasure to work with. If I call her with any questions at all about Kimmy, I can expect a ready answer, or at least some quick research and a call back. Jodi, and the rest of the clinic staff, make us feel as if Kimmy is their favorite and most important patient. When we walk through the front doors of the Community Health Clinic, I cease to be “Marla.” I become “Kimmy’s mom,” and I love it. We feel special, and I am sure that every family who receives help there is made to feel the same way.
I once left my coat in the clinic’s lobby after an appointment. I called the clinic as soon as I got home to make sure it was there. They said they would mail the coat to me, and when I mentioned paying for postage, they said it would be taken care of. About two days later, Stephanie dropped the coat off at our house.
Last, but definitely not least, Dr. Z. We have appreciated her so much over the last year and a half. Dr. Z is studying ZSD and was able to explain everything about Kimmy’s disorder, with compassion, in a language we could understand. She encourages us about the way things are going and wants to help do everything we can to improve Kimmy’s quality of life.
I realize that all these things may seem like “All in a day’s work” to the clinic staff, but the cheerful attitudes and the above and beyond favors mean so much to us families who have been blessed with these special children. Thank you for being there for us.
Our sweet little Kimmy is 17 months old now. She is a happy baby who brightens our day from the time she wakes up in the morning. Kimmy has mild to moderate hearing loss and wears hearing aids. She is on medication to support her liver and takes a liquid multi vitamin to supplement the vitamins her liver does not readily absorb. Kimmy has a speech and language therapist and a developmental therapist who come to our house for one hour each, every other week.
We have been so blessed with caring and supportive family, friends and community. May God bless you all.