The Margot Jayne Memorial Fund

03/18/2025

Forever missing my baby girl ♥️ Today we spread awarenesses and honor your life, sweet Margot.

10/21/2024

After losing Margot and my dad, I often turned to books to help navigate my own grief and also explain grief and loss to our oldest daughter who was just 2 years old at the time. This past year, we were able to collaborate and donate to Stark Library to develop several different grief kits to help those in our community experiencing loss. Now in circulation, almost all of the kits have been checked out and some even have had hold lists of 20+ patrons waiting, highlighting the need for this important resource. Tune in to this news segment to hear about all the different kits Stark Library has to offer, including the newest grief kits donated in memory of our girl! ❤️

03/19/2024

Today is Trisomy 18 Awareness Day. Thinking of all those affected by this diagnosis today and as always missing our beautiful girl ❤️

09/07/2023

September is NICU awareness month 💚 We will never forget the almost 6 months we spent with Margot in the NICU.

03/22/2023

Spreading awareness for Trisomy 21 today.

Trisomy 21, or more commonly known as Down Syndrome, is the most common trisomy to occur. Before Margot, I didn't know much about trisomies in general. Here are some facts that I have learned about T21/Down Syndrome.

-With all trisomies, how much a person is affected by having an extra chromosome can be a vary wide range and this is also true with Down Syndrome.

-Many individuals with Down Syndrome do have some intellectual impairment which ranges anywhere from mild to moderate to severe, but this is not always the case and it is totally possible for a person with DS to have an average or even above average IQ.

-Down Syndrome can cause a wide range of health issues, with some individuals being more greatly affected than others.

-About 50% of babies born with Down Syndrome have a Congenital Heart Defect (CHD) which typically requires surgery during infancy. It wasn't until the late 1960s that open heart surgery for infants with a CHD became widely available. This medical advancement has greatly impacted the life expectancy for those with DS.

-People with Down Syndrome, like all people, are individuals and should be treated and celebrated as such. People with Down Syndrome are often discriminated against and it is important for all of us to advocate for their rights and inclusion in our communities.

03/19/2023

Today is Trisomy 18 Awareness Day (3/18) 💙 We love and miss you so much every day, baby girl.

Before Margot, I don't think I could have told you much about any Trisomy, much less Trisomy 18. When we first suspected Margot's Trisomy 18 at 8 days old, it felt like the worst luck in the world. There was nothing we could have done to prevent it and nothing we could do to truly "cure" her. But with time and learning more about Trisomy 18, I strive to see the good fortune that we did have in an unfortunate situation.

T18 occurs when a person has an extra copy of chromosome 18. This chromosome has approximately 80 million DNA base pairs and makes up about 2.5% of a person's DNA. In short, that is a LOT of DNA. While Trisomy 18 is the second most common trisomy to occur in live born babies, many fetuses affected by Trisomy 18 never make it this far. Margot came out crying and pink, just like you would hope and expect with any baby. Without knowing it, we were amongst some of the lucky ones to even meet our daughter alive at all. Of the babies with T18 that are born alive, only about 50% make it through their first week of life. Margot's first days were anything but easy, but again (with a LOT of medical help) she surpassed the norm and we were blessed with almost 6 months of snuggling her, talking to her, and looking into those beautiful eyes with extra long eyelashes. Some kids with T18 do go on to live longer lives, I'm sorry we couldn't be amongst them but I'm thankful for the time we got.

Our time with Margot opened our eyes to a whole different lifestyle caring for a child in the NICU facing a life limiting condition. Caring for a child with a critical congenital heart defect. Caring for a child as they go through chemotherapy for cancer. A child who is tube fed. On life sustaining breathing support. Just everything. During the peak of a global pandemic. Aside from the grief of missing her now, it was the most difficult time of our lives in every single way possible - emotionally, financially, socially, just everything. But we also were so fortunate to have so much love and support from our friends and families. And that's why this memorial fund is so important to us - to continue to pass that love forward to others who are still fighting the good fight ❤️

03/13/2023

❤️

Meet Jacob Edwards!

This tiny but mighty little boy is ready to take on the world. Jacob was born with trisomy 13, also known as Patau syndrome, a genetic condition that gave him an extra chromosome 13. He left the NICU just shy of 200 days and has made big strides, literally. The 3-year-old loves being able to take steps in his walker and is all smiles when he is on the go. Jacob is currently learning to make choices, and absolutely loves the attention from his teachers and therapists as he progresses.

Today is Trisomy 13 Awareness Day, and Jacob’s mother, Holly, says Jacob is thriving.

"I think Jacob would want everyone to know that even though he may be rare and unique and very different from other 3-year-olds, he is quite compatible with not only life, but love, joy, fun, learning, growing, snuggles, and so much more!"

03/07/2023

Who is at risk for Trisomy?

Anyone who gets pregnant is at risk of carrying a fetus with a trisomy. Risk of trisomy increases with maternal age, but can still occur at any maternal age. Most cases of Trisomy are "De Novo", meaning that they are due to a random error in cell division and not hereditary. This was the case with our Margot.

In very rare cases, a parent may have the typical "amount" of DNA, but it may have an unusual arrangement where some genetic material from one chromosome is stuck to a different one instead of being on the chromosome where it is typically found. This "balanced translocation" can significantly increase the odds of passing on "extra" genetic material to children in what is called a "Partial Trisomy".

And that's a pic of my Margot belly in 2021!

03/01/2023

03/01/2023

March is Trisomy awareness month ❤️ I'll be sharing some Trisomy facts this month in honor of our extra special girl!

What is Trisomy?

Trisomy is a genetic condition in which a person has an extra copy of a chromosome. A person with trisomy will have 47 chromosomes instead of the typical 46. The extra genetic material often causes a range of physical abnormalities and developmental delays with a varying range of severity.

02/20/2023

Welcome to the Margot Jayne Memorial Fund page! While we have had our memorial fund set up for a little while now, I finally set up an online page for our nonprofit.

When we discovered that our 8 day old daughter Margot had Trisomy 18 our world as we knew it was shattered. With the help of so many medical staff and many prayers, we were fortunate to have Margot earthside for nearly six months, all of which was spent in the NICU. Margot's short life was filled with struggle, but it was also filled with so much love. We would like to honor Margot's life by continuing to spread love, hope, and kindness to other families facing the unimaginable difficulties of medical life, especially those infants and children facing life-limiting genetic condition and those living the ups and downs of NICU life.