Hi,

My name is Kerolyn, mother of Elizabeth Relf.

When my husband & I decided to have another child we never expected for this beautiful angel to come into our world.

At 32 weeks pregnant, I went in for a regular ultrasound and events didn't go as planned.

The technician was having a hard time getting the right measurements so she called in the doctor to help her out. The doctor on duty was very nice, she asked us her name and my husband and I said Elizabeth practically at the same time. The doctor was so friendly as we were speaking about our baby.

The doctor examined the ultrasound for a few minutes and then immediately asked me to get dressed so that we could speak in her office about Elizabeth being born without a part of her brain.

It hit so hard I felt like I was floating. After that appointment I did an MRI to confirm the findings but we were still hopeful she would be born without any other problems. The part of brain that is missing is called the agenesis of the corpus callosum (ACC) and with this there was still a 70 percent chance a child could be perfectly normal. 

August 14th came and she was born. My life changed this day, I became a mother to a child with special needs. The words special needs feels so strange but caring for her feels so natural. She was the most beautiful newborn. She looked absolutely perfect, and for 6 hours she was. Until they had to take her to the NICU for low oxygen levels.

It took us 17 days to get her home. And for a week she was perfect again. At her follow up we were told she had low muscle tone, and at her cardiology follow up we were told she had a thicker left ventricle and we were sent to the liver doctor where we were told her liver enzymes were high. He sent us to a geneticist who swabbed Elizabeth, myself, & my husband and told us the results would take 6 weeks. 

In the meantime Elizabeth had two rounds of fevers. Both fevers lasted for about 5 days each, the last fever left her so weak she was having a hard time with her breathing. We took her to the emergency room and she was admitted right away.

The first week she had a ton of lab work , x-rays and antibiotics. The second week she had another fever so the doctors started the blood work, antibiotics and X-rays again. November 21st we received a call from the geneticist in the afternoon. He called to tell us Elizabeth has Vici Syndrome an ultra rare syndrome she which is one in a million and there is no cure for this very severe disease.

The geneticist told us over the phone that the life expectancy is 2 to 3 years for someone with Vici. Our worlds were shattered by those words My heart ached, I felt like I wasn’t in my body, it was hard to breath. Ryan was holding Elizabeth as I sat there sobbing in disbelief. Not my baby, I thought to myself, anything but this diagnosis.

What is hard with this syndrome is that these babies suffer a lot from fevers, inflammation, and infections but the worst part is that the cause of these symptoms are unknown. While in the hospital I sent a text to our cousin Trivia who is an angel sent by God. She has a background in science and understands so much of what Elizabeth is dealing with. Trivia introduced us to a geneticist in Kansas who is doing research and working on repurposing FDA approved drugs that could be used to treat this disease. The geneticist is using mice models in a laboratory to identify drugs that could be used as a possible tharapy for patients with Vici. The research he is working on needs funding. This is hope for a better life for kids with Vici.

We also spoke to a few families that also have kids with Vici which helped us tremendously on getting the right treatments for her fevers and getting the right doctors involved. For now we are living each day to the fullest and believing in our father in heaven who is the God of miracles.

He created Elizabeth and only He knows every cell in her body. We trust in you lord and put our worries in your hands for only you know what you have planned for us. Elizabeth is a very happy, intelligent loving baby. She’s a fighter and has so much love surrounding her. We couldn’t imagine life without her, please pray for healing and a miracle for our baby girl. She’s such a blessing.

Your donation would help fund the on going research and give so many Vici families great hope for a future with our babies. 

I would love to say that a lot of research is being done to help us but there isn’t. Our only hope for finding a cure is the geneticist in Kansas. With the disease being so rare, it’s forgotten about or pushed aside as we've being told by doctors hospitals won't allocate a budget to something so rare.

But to our Vici families it’s what we live to fight for. I think about it every second of the day.

If only I could take it all away and give her every cell in my body I would. 

Elizabeth was sent here to show me unconditional love, strength, the power in prayer, the true meaning of life. She’s not a normal baby they told me and I agree, she’s more then I could have ever imagined, she’s my heart ❤️ my everything.