We’ve spoken a lot about FOXG1 here on our blog and on our social media. It’s the genetic condition that Mer, the MTeam’s Chief Motivating Officer (and the reason for that “M”), was born with and continuing to raise awareness for her family and others is important to us.
With November being FOXG1 Awareness Month, we thought it would be especially fitting to share the story of another family who have a daughter that was also born with FOXG1. And so we’d like you to meet Ali. Read on as she talks in detail about the lovely Moe in particular, what their family’s life is like day to day, some of the ways the have fun together, and a few things that would make the world a more inclusive place for Moe and other children who were born with FOXG1.
MTEAM: Tell us a bit about yourself and your family.
ALI COLLINS: My name is Ali Collins. My husband, Alec, and I have three wonderful and beautiful children. Moseley is 6 and our little fox. Tempest is almost 3 and a wild child just like her name would suggest. Asher is 18 months and always smiling. We love to listen to music and dance. We make the most of the things we can enjoy together. My husband is a citrus farmer and the world's best dad.
MTEAM: Your daughter Moseley was born with FOXG1. How common is it? Can you explain a bit about what it is exactly and how it manifests itself - in Moe’s case in particular?
AC: Moseley is one of 375 FOXG1 patients in the entire world. FOXG1 Syndrome is a rare neurodevelopmental disorder caused by a mutation of the FOXG1 gene, which impacts brain development and function. Moe’s symptoms are seizures, lack of limb control, and trouble breathing. She is non-mobile and non-verbal as well. Her most severe symptom is impossible adorableness!
MTEAM: Tell us a bit more about Moe!
AC: Moe is six and the biggest homebody. She loves her bed and a good cuddle. She has loved to listen to Motown since she was born. Moe has her own language that she speaks with her eyes. It is uniquely hers. It's a great privilege to sit and talk with her every day. Caring for her can be stressful; but as soon as I hold her in my arms, it all goes away. She is a strange little soother. I guess what I’m trying to say is almost everything about Moseley is unique. We’re in love with her.
MTEAM: What’s a typical day in Moe’s life like?
AC: Moe is fed by a G-tube and so every morning before school we have to give her her medicine and make sure she's off the pump in time for school. At school, she gets physical, speech and occupational therapy. She also gets to play and learn with her friends. When she comes home, we usually cuddle for a bit and listen to an audiobook or some music. She loves to watch her little sister and brother play before bedtime. Then we go back on the pump and get ready for bed. She has to take different meds at night and we usually check her pulse ox levels and make sure her breathing is ok. If not, we give her a breathing treatment and get prepared for a hospital visit. We've been lucky to not have to go in a little while. Nighttime is always hard on her. She wakes up a lot and cries. She sleeps about 4 to 6 hours a night. We’re still not sure what that's about. With a kid like Moe, we have to just go down the list and check things off until we figure out what’s wrong.
MTEAM: Tell us a bit about Moe’s siblings and their relationship with her. What do they love to do together? Do you have any advice for other parents on how to explain a diagnosis like FOXG1 to a sibling?
AC: Moe has a little sister and a little brother and they love their big sister. Moe does get annoyed with them as any big sister would, but they seem to get along ok. Tempest is still young, but knows not to play rough with her and not to touch her medical equipment, but that’s about all she understands right now. It’s kind of amazing how she sees Moe just as she is - beautiful and perfect. Temps always reminds me to see past the body and look at her soul.
I don’t have any advice except for teaching your children to be involved. We try not to separate them too much and let them all interact with each other like typical children. I’m still new at this and am learning as I go, but it’s a fun ride with all my little monkeys.
MTEAM: What have been some of your biggest challenges and the best rewards along your journey with Moe so far?
AC: The biggest challenge is fighting for what Moe needs. It’s an endless battle to advocate for our children, but we do it. We get up and we fight until it’s closing time. Then we lay down at the end of the day exhausted and overwhelmed just to do it all over again in the morning. Everything is hard. Fighting for anything she needs - from care to equipment - never gets easier, but when I see her smile just for a minute, I know it was worth it. Every snuggle or hum she gives in appreciation is the reward. We fight big to appreciate the small.
MTEAM: What advice would you offer to other parents who are just finding out about a FOXG1 diagnosis?
AC: The first thing I would say is welcome to the family because that's what you become when you have a child with a rare disorder. The second and the most important; ASK FOR HELP. You can't do this on your own and if you could, why would you want to? Get a community. Reach out to other parents. We’re here and we want to help. Third, take care of yourself. The best thing I’ve done so far and something I regret not doing sooner is aggressively pursuing myself. Take time to love yourself and to take care of you, or you won’t be able to care for your little one.
MTEAM: What key changes would make this a more inclusive world for children with FOXG1?
AC: Remembering that first and foremost they’re children. We say children with FOXG1 Syndrome, not FOXG1 children. They’re people first and if we learn to love them as people first, the rest will follow. The stigma of disabilities is widespread and often we do not prepare our children to interact with kids like Moe. Teach them young to love and the world will follow.
MTEAM: What have been some of your favorite, most supportive or most useful resources during your journey with Moe? Any resources you’d recommend to others?
AC: First, my husband. No one will ever understand what you are going through with your specific child like your partner. Nurture that relationship; it’s the strongest weapon in a lifelong battle. After that, it would have to be my family. Their support has been my lifeline.
As far as resources, find a support group online and get to know those parents. Lean on them; that’s what they’re there for. I haven't had any books really stand out to me and I try to stay away from the internet. It can be a scary place.
MTEAM: What’s one thing you’d like the world to know about Moe or about FOXG1?
AC: She a little girl not a china doll to just be looked at. Love her like you would any 6-year-old. FOXG1 is just one little thing about her. It’s not everything.