When Corrigan was first born, his doctors warned us about how quickly he could slip into a metabolic crisis. If you’ve been following from the start, you know that we have always feared the darkest hours of the night because we were told that de-compensation could occur in the span of a handful of hours and the signs of crisis are masked by sleep. For years, I would stop at the entrance to his room and steel myself for something tragic. Many a night I would tip-toe into his room and kneel beside his bed and shakily place my hand onto his chest, whispering prayers that he would still be breathing.
The fear was so intense but as he got older and more metabolically stable, the fear found a place farther into the back of my mind. Corrigan had a glorious two-year stretch of great health and while we never let down our guard, we felt our shoulders relax and one morning I realized that I was no longer holding my breath when I went into his bedroom.
Of course, a life with a Urea Cycle Disorder is never a steady one and Corrigan has been in crisis a handful of times in since his two-year stretch but I have never forgotten the warnings given those first weeks of his life.
Last week, a fellow UCD family was smacked in the face with what we have all feared, when they put their two affected children to bed and woke to a life drastically changed. The Cotman’s are blessed with a son named Mason and a baby girl, named MacKenzie. Both children have Citrullinemia, the same Urea Cycle Disorder as Corrigan. Over the course of a short evening, both Mason and MacKenzie were hit with symptoms from a common viral illness and Mason was found in the middle of a seizure. He was struck with several more seizures on the way to the hospital. MacKenzie was also very sick and in danger of falling into crisis. She too was rushed to the hospital.
Longtime readers, and UCD families, understand the “safe” and “unsafe” ammonia numbers and Mason arrived in the emergency department with an ammonia of 888. I will let that sink in. Eight hundred and eighty eight. My God. He was rushed to Intensive Care and quickly put on hemo-dialysis in order to whisk the deadly toxin from his blood while his brain swelled dangerously. Downstairs, in the ER, doctors worked quickly to prevent Mason’s baby sister from deteriorating.
In the days following the crisis, Mason’s levels have returned to normal, but he has been impacted by the event and is not the same little boy that he was last Monday. The Cotman’s have been taking turns by their children’s beds, missing work in order to stay with their children and in the middle of this frightening situation they now find themselves evicted from their home.
Can you imagine?
They are being forced to move their belongings by November 1st, all the while a horrible storm is barreling towards their NYC area, closing mass transportation and making packing nearly impossible. I cannot imagine the stress this family is facing. Mason will need months of rehab and his team is suggesting liver transplant as soon as possible. Daddy has to go back to work and Mommy is torn between staying by her son’s side while simultaneously tending to her little girl, who has recovered well but needs nursing care and is not able to be in public daycare, and packing up a home.
The National Urea Cycle Disorders Foundation has set up a fundraiser for The Cotman family, in hopes of raising funds to help with the costs of a move to a new apartment, lost wages and covering the cost of a medical sitter to stay with Mason while Shanisha tries to pack up their life in the middle of a storm. In the course of 24 hours, we have reached our initial fundraising goal but hope to double that amount in the next 48 hours.
I realize that most of us are feeling the squeeze on our wallets in this economy but we have reached our starting goal in short time and we can easily double that amount with smaller donations. No amount is too small. If you feel led to help in any way, the fundraiser is set up so that you can make a donation with a credit card (super easy, that is the way that I did it) or with PayPal. I have spoke with Mason’s mommy on the phone, and through email, and I can tell you that her thankfulness for your kindness is enormous. Your generosity is so very much appreciated and I personally thank you for your donation.
Finally, if you are unable to donate and believe in the power of prayer, please send one up for this family. It is hard to know the reason for the trials that they are enduring, but I will continue to petition God on their behalf through my prayers and ask for yours as well.
Please consider a donation HERE.
Thank you again!