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Join Isaac's Journey to Overcome OTC Deficiency

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I am starting this goFundMe for my dear friend Carrie’s son, Isaac. If your heart feels led to donate and pray we would be forever grateful.

On February 20th, Nick and Carrie Calkins welcomed their third son,
Isaac, into the world. Isaac joined his big brother Logan, a healthy
and vibrant 7-year-old. In 2021, their precious second son, Cole, was
born with a rare genetic disorder called ornithine transcarbamylase
(OTC) deficiency. Tragically, Cole's life was cut short at just 5 days
old due to complications from this condition. Unfortunately, Isaac was
diagnosed in utero with the same disease as Cole.

They have been working with an amazing team of specialty doctors at
Mott’s Childrens Hospital. OTC deficiency is a rare genetic disorder
characterized by the lack of the enzyme responsible for breaking down
nitrogen in the body. The lack of the OTC enzyme results in excessive
accumulation of nitrogen in the form of ammonia in the blood. This
excess ammonia, which is a neurotoxin, travels to the central nervous
system through the blood, and is typically fatal if uncured. As of
now, the only existing cure for OTC deficiency is a liver transplant.

Isaac has already faced more medical challenges in his short 4 months
than many experience in a lifetime. He spent two weeks in the NICU,
has been hospitalized for elevated ammonia levels, has to have lab
work done multiple times per month and currently requires three urea
cycle medications and specialized formulas to manage his condition.
Isaac is scheduled for a g-tube placement and MRI June 25th as part of
his ongoing care.

Despite these challenges, we are grateful that Isaac has been approved
for the liver transplant list and is awaiting a suitable donor.
Recently, he was elevated to 1B status on the list, giving hope that
he may receive a transplant this summer. Until then, Isaac must adhere
strictly to his medical regimen as directed by his doctors.

We have set up this GoFundMe to ask for your support during this
difficult time. Your donations will help cover medical supplies and
expenses not covered by insurance, expenses incurred while in the
hospital, missed wages due to caring for Isaac, and other unforeseen
costs. Your prayers and support mean the world to the family as they
navigate Isaac's journey to health.

Thank you for your continued support. The path ahead will not be an
easy one, but we know that God is leading us. Please keep Isaac in
your thoughts and prayers, and check back for updates on his progress.

“For I know the plans I have for you,” declares the Lord, “plans to
prosper you and not to harm you, plans to give you hope and a future.”

Jeremiah 29:11

UPDATE from family: 6/25/24
Well, the last 24 hours have been a roller coaster of emotions. We received a phone call late last night saying that they had a liver match for Isaac so they cancelled his surgery this morning. Unfortunately, we were just notified that the donor family changed their minds at the last minute.

As you know, we have walked the path of child loss. The pain is unimaginable and we respect their decision to do what is best for their family. Our hearts are broken for them and we hope you will lift them up in prayer with us.

While we are disappointed, we know that God has a liver for Isaac. Please continue to pray for him that he would receive a match soon. They are rescheduling his g-tube surgery for tomorrow morning so we will keep you posted on how he does. For right now he is staying busy snuggling up with mom and dad and checking out the cool fish tank they brought in for his crib.


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Donations 

  • Krista Eggleston
    • $20
    • 7 mos
  • Krista Eggleston
    • $20
    • 7 mos
  • Martha Villanueva
    • $100
    • 7 mos
  • Anonymous
    • $50
    • 7 mos
  • Anonymous
    • $20
    • 7 mos
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Organizer and beneficiary

Jennifer Kovach
Organizer
South Lyon, MI
Carrie Calkins
Beneficiary

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