Our story is God’s story. “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 Even though we have not always understood God’s plans for us, we believe they are designed for us, and not anyone else.
I was raised to love Jesus & I know that God is good. I witnessed this through my father’s life. My dad, Tony, walked with Jesus every day and shared his love for Him with everyone he met. When he was diagnosed with colon cancer and given a year to live, instead of blaming God, he turned his life over to God. He believed that God is bigger than any illness or problem in our lives, and he spent his days sharing this with others. He told anyone who would listen how much he loved Jesus and how good God is. My mom, Tina, was always by my father’s side. As she cared for my dad, her best friend, the love and affection she felt for him was always present. That love, along with her strength, is something I have always admired and something I strive to possess in my own marriage.
In September of 2011 I started to date the man I would one day marry. Brandon quickly became my best friend. He is someone I can count on for a laugh or a reminder to be patient and wait for God’s plans to unfold. We were married in June of 2014, and since then, we were blessed to extend our family. Franco was our first baby, and he is the goofiest labradoodle who likes to watch TV, eat treats, and he loved his baby brother Graham the most.
Graham was born prematurely at 24 weeks & 4 days. Graham weighed less than 2 lbs. He could not breath on his own, eat on his own, and his tiny, yet perfect, body simply needed more time to grow.
We immediately fell in love and quickly took on our role as parents, caring and protecting this sweet little boy. Graham’s birth taught my husband and I that even though God’s plans and our plans may differ, His plans are always better. We did not understand why Graham was born early, but we knew God had a plan and purpose for this little miracle.
Knowing this allowed us to be at peace in the midst of uncertainty. Graham spent 105 days in the NICU. He overcame breathing challenges, heart complications, & feeding issues. With the help of many doctors, nurses, specialists, & our Heavenly Father, Graham was thriving for a 24 weeker!! Every doctor who met him after the NICU was amazed he was a micropreemie because he was doing so well. His demeanor and abilities were on par with his adjusted age and it was clear he was progressing perfectly for a former 24 weeker.
On November 22, 2016 – 5 days after he turned 1 – Graham experienced a prolonged seizure that forced him to be hospitalized at Children’s Healthcare of Atlanta. The seizure did not respond to any medications, so the doctors put him in a medical coma to give his brain a break. After waiting 4 days, they started to wake him up. As the medicine wore off, Graham started to seize again. The doctors were forced to sedate him again as they worked to determine a cause for the seizures. Countless doctors and specialists tried to understand his condition. They performed numerous tests trying to determine a cause or diagnosis.
Finally, on January 16, 2017, Graham was diagnosed with Alpers’ disease. This mitochondrial disease is characterized by developmental regression, seizures, & liver disease – and Graham had all of these symptoms. It is a very rare disease only affecting less than one in ever 200,000 people. There is no cure for Alpers’ disease & no way to slow its progression. Graham’s symptoms indicated he had a more severe case. Treatment for this disease is symptomatic and supportive, and the prognosis for individuals with Alpers’ disease is very poor. The life expectancy is anywhere from a few months to 10 years. Graham passed away on January 24, 2017, 10 weeks after his first seizure.
We hope to turn this awful experience into something beautiful. During Graham’s hospital stay we created a Caring Bridge account to update our family and friends on his condition. It was therapeutic for us to write these posts since it provided an outlet to share our concerns, fears, and prayers. What we didn’t expect was the impact it would have on our family, friends, and even strangers. For those new to our story, you can find those posts here. And for those who have been here since the beginning, when you find yourself facing your own struggles, we hope you can use them to renew your faith and that they may provide you with strength to overcome any challenge you experience.
Like our Caring Bridge posts, we want to continue to inform others about rare disorders like Alpers’ disease and in the process, we hope to encourage those who need it. Our story is not over, it’s simply taken a new direction.