Even When the Sky is Falling: A Mother’s Journey in Choosing Joy

I first came across Megan and Nellie’s story on Instagram and was heartbroken to learn that Nellie, just a little younger than my daughter Caris, has Terminal Infantile MLD (Metachromatic Leukodystrophy), a rare, terminal brain disease. Heartbroken and moved by their journey, I reached out offering to send holiday dresses to bring a smile, and Megan responded with warmth and gratitude. Her strength has deeply inspired me to live life with more intention and joy, so I asked her if it was ok for me to share her story in hopes of inspiring others as well. She graciously agreed, and sent me these beautiful photos of her and Nellie in our dresses. 

Megan Gillett, a 37-year-old mother of two from the UK, is living each day to its fullest with her husband, Tom, and their children, Nellie Sunshine (almost 5) and their 18-month-old miracle baby, Ozzy.

.                         Nellie and Ozzy smile for pictures

Megan began sharing their story on Instagram as a way to thank those who had donated to a GoFundMe set up for the family by a dear friend. What started as gratitude grew into a space for Megan to share the lessons she’s learned from Nellie—lessons in creativity, resilience, and the power of living with joy in the face of hardship.

 The Gillett's last family pic before Nellie's life-changing diagnosis in April 2022.

Nellie’s diagnosis came after a long, challenging process during the height of the COVID-19 pandemic. Initially, Nellie seemed to be developing normally, but there were some concerning signs—she couldn’t walk, and she had a squint in her eyes. After a year of battling for answers, a brain scan revealed damage to the white matter of her brain, and the family was told that Nellie’s condition was progressive.

“The hardest part was having to go to the appointment alone because of COVID restrictions,” Megan recalls. “I was told that they thought it was something progressive (which would affect life span), but it would take a month of invasive tests to get a proper diagnosis.”

The family was eventually referred to London, where they were told Nellie had MLD, a rare and terminal condition. “This was in May, and by August, she couldn’t speak, drink, or move. Since then, we’ve lost so much of her. She’ll likely lose her sight, her hearing, become paralyzed, and experience dementia. Her life expectancy is 4 or 5 years old (though some have made it to 8)."

Despite the heartbreaking prognosis, Megan has remained fiercely determined to live every moment with Nellie to the fullest.

Choosing Joy, Even When the Sky is Falling

When asked about her motto, “Even though the sky is falling, we choose happiness,” Megan explains: “I truly believe we have a choice in how we respond to what life throws at us. The day after Nellie’s diagnosis, we went to a farm. Tom was crying, and I felt like I couldn’t breathe from the pain. But we chose to channel that energy into creating joy for Nellie.”

For Megan, choosing joy has become a daily practice, even amidst the devastation. “I want to be happy, and I deserve to be happy. I choose to focus on the moments of joy, however small. We make life choices that nourish our souls, because we know life as we know it will end. But while we have it, we choose joy. It’s not always easy, and we’re not always ‘happy,’ but we feel lucky every single day.”

This mindset has kept Nellie more cognitively aware and present in the world, and has served as a foundation for Megan’s own personal growth.

Life with Nellie and Ozzy is full of love, joy, and a commitment to being present, even in the midst of adversity. The mornings start early for Megan as she tends to Nellie, who struggles with choking on secretions, a side effect of her condition. After breakfast, they often head out to music classes and enjoy long walks in nature, where Megan believes healing happens. “I really believe in the power of movement so we will normally extend our walk on the way home from music class. We spend as much time outside as possible. Nature is a healer."

In between caring for her children, Megan also makes time for self-care, working out five times a week and finding moments to write or create content for her Instagram. “It’s a full day, but I love it,” she says. “Tom comes home for lunch, and we try to make it as special as possible with family time before the kids go to bed.”

The Best Part of Motherhood

Of course, motherhood is not without challenges, but Megan keeps it all in perspective. When asked what the best part of motherhood is, she doesn't hesitate: “Everything. It’s a cliche, but it’s true. To have two little humans look at you with so much love is the greatest privilege of my life. They’ve changed me for the better. I didn’t lose myself in motherhood; I found myself. I think motherhood is a metamorphosis—a chance to become a new version of yourself. If you embrace it, it can be a beautiful thing.”
Motherhood has also sparked Megan’s creativity. “If I can create life, what else can I create? It’s inspired me to chase my dreams, not just for myself but for my children as well.”

Advice for Other Moms

Megan's advice for other mothers navigating the terminal illness of their child comes from the wisdom she's gained through her own journey. “I haven’t received much advice. We’ve relied heavily on our instincts. The best advice that stuck with me, though, came from a mum whose daughter is 11 and has MLD. She told me that we would have some of the happiest days of our lives ahead of us, and that really helped keep me going. I thought our happiest days were behind us, but she assured me they would come again.”

Megan also shares a powerful piece of advice: “You know your child. Medication is often pushed, but it’s not always necessary. We’ve been lucky that our consultants have been honest with us. They’ve told us that medications will do more harm than good in the long run. I’m so glad that, in the beginning, when we could have turned to medication to help calm Nellie, we didn’t. We trusted our instincts, and it has guided us well.”

She adds, “You deserve to be happy. Don’t let the guilt in. Let yourself live a life you enjoy and enjoy every moment you can, guilt-free. Life is punishing you enough, so don’t punish yourself.”

Finding Joy in the Little Things

In the face of unimaginable pain, Megan finds joy in the small moments of life with Nellie. One of the things she and Nellie enjoy most together is dressing up. 

“The [EleStory] dresses are so beautiful and feminine,” Megan says. “I love fashion, and Nellie loves to shop and be shown clothes. When I showed her the dress, she had the biggest smile. It’s such a special thing to match with her and to feel connected in that way.” She adds, “The quality and cut of the dresses is perfection.” It’s these small, beautiful moments—like the joy of dressing up together—that keep their bond strong and remind them of the happiness they can still create in their lives.

Giving Back 
While navigating the heartache of Nellie’s diagnosis, Megan is immensely grateful for the organizations that have supported her family along the way. In particular, Nellie's nurse Emma from Chestnut Tree Children's Hospice, has provided amazing support to Nellie and the family. “They’ve given Nellie so many incredible experiences—she’s skied, ice-skated, and sailed. They’ve created opportunities for us to make the most of our time together,” Megan says. “And they gave us the chance to have a special getaway when Tom turned 40.”

Megan also wishes to highlight Genie’s Wish, a charity that grants wishes to children with life-limiting conditions. It's made such a difference for their family. If you feel inclined to support the incredible work being done by Chestnut Tree Children’s Hospice and Genie’s Wish, please visit Genie's Wish and Chestnt Tree Children's Hospice - both have links to donate directly.

Additionally, on Giving Tuesday (12/3), EleStory will donate a percentage of our sales to these two organizations, so you can shop with purpose and make a meaningful impact.

Megan and her family’s story is a beautiful reminder that, even in the face of the unimaginable, we always have a choice in how we live—choosing joy, embracing the moment, and making the most of the time we have. Watching their journey has been deeply inspiring, offering me a new perspective on life: that the happiest days are always ahead of us, if we choose to make them so.
You can follow Megan and her family's journey on @megan_mumma_sunshine. 

xo, Judy