10 minutes with FOXG1 Super dad Greg Wells \ By M-Team Cares

Meet Greg Wells, FOXG1 dad to Emma and Alli

MTEAM NEWS & STORYTELLING

10 Minutes With: FOXG1 Super-Dad Greg Wells

With Father’s Day coming up this Sunday, we wanted to know what being a father to children with disabilities really looks and feels like. So we turned to Greg Wells, rock-star dad of two wonderful daughters, Alli and Emma, both with FOXG1. We were touched by his honesty and humility in sharing what fatherhood means in his world. And, after hearing what he had to say, we're pretty sure that Alli and Emma are the luckiest girls in the world to have Greg for a dad!

FOXG1 dad to Emma and Allison, Greg Wells

MTEAM: Greg, tell us a bit about you and your family.

GREG: I am married to Felicia and we live in San Diego, CA. We have 2 daughters, Emma – 17 and Allison – 13, both diagnosed with FOXG1. Felicia is from New Hampshire and I’m from New Mexico and we both came to San Diego for school which is where we met.

MTEAM: Can you tell us a bit about Alli’s and Emma's diagnosis and what that means in a practical sense for your family?

GREG: Both girls are in wheelchairs and non-verbal. They need assistance with virtually all of their daily needs. Emma has a feeding tube and gets all of her nutrition and meds through that. Alli eats by mouth (all of the time) but requires someone to feed her. Daily life is a pretty busy constant stream of transitioning the girls, feeding, medicine, toileting but also luckily reading, goofing off, giggling and snuggling.

MTEAM: Tell us more about Alli’s and Emma’s personalities.

GREG: Emma is a very mellow, laid back young lady. She rolls with the punches and seems to be unfazed by her challenges. She unfortunately has seizures and typically falls asleep after one. She will wake up with a smile on her face as if to say “what else you got?” It is both heartwarming and heartbreaking all in the same moment. 

Alli is decidedly not laid back and mellow. She struggles with some significant behavioral issues that have proven to be very challenging. We think she is angry because her body isn’t allowing her to do what she wants it to and she isn’t able to communicate effectively with us what she wants. But she also has, without a doubt, the most infectious giggle and silly personality and can turn on the charm like no other. Although she is now 13, she still loves to snuggle.

MTEAM: What have been some of the biggest challenges that FOXG1 has brought into your life?

GREG: The daily physical challenges and exhaustion of lifting, transferring, feeding, medicines, etc. are a constant struggle. Just the process of getting out of the house to run errands is quite the production. All of these things lead to pretty serious emotional exhaustion as well. Emma’s seizures are one of our biggest, ongoing concerns. It is very difficult to watch that happens to your child and know that you are somewhat helpless while it damages her system.

Emma and Alli were both born with FOXG1 syndrome

MTEAM: Share a memory of one of the times you’ve been especially proud of the girls.

GREG: Throughout both girls’ schooling, they have been given any number of ‘awards’, like ‘great attitude’ or ‘always smiling’ but almost never true learning or schooling based awards. When Alli was in 5th grade she had a teacher that was actively working with her on communication skills and her communication device and received an award for her efforts in improved communication. Alli could not have been prouder of herself when she received it and we could not have been prouder either. With Emma, I’d have to say that despite her issues; FoxG1, seizures, non-verbal, feeding tube, ulcerative colitis, etc., she wakes every morning with a smile and falls asleep every night with a smile. How can you not be proud to have a daughter like that?

Alli wins an award at school for improvements in her communication!

MTEAM: What would you most love for people to know about FOX G1 in general or about your daughters' journey in particular?

GREG: Both our girls bring a bright light into the world.  They have taught me empathy, courage and what unconditional love looks like. There are days (and plenty of them) that are filled with feelings of anger, loneliness, resentment, guilt, you name it. However, when one of these young ladies looks at me and smiles and laughs, I am reminded how strong and resilient and genuinely loving they are in spite of everything they are struggling with.

MTEAM: What is a typical day in their life like?

GREG: I guess ‘typical’ is a relative question. I don’t like saying or thinking this, however, a typical day for us is similar to a typical day for a family with a baby or babies. Mornings are a pretty busy combination of waking up (not easy with 17-year-old Emma), getting them dressed, fed and ready for the day. Both girls are basically dependent on us for all daily needs. Both girls attend their neighborhood schools (at least they did pre-Covid) and are in special ed programs. We are lucky to live in San Diego, so weekends and summers offer some great options that are accessible and the girls enjoy, such as the zoo, Balboa Park, aquariums and of course the mall. We basically coordinate our outings around Alli’s meal times because that young lady loves to eat. I guess I can quote a line from the movie Tombstone that sums it up; “There is no normal life, there is just life.” Our days are anything but normal, they are just our life.

MTEAM: We’re living through a strange time in history with the current Covid-19 pandemic. What changes and/or worries has this brought to your life, specifically as a parent? How have you been spending your days?

GREG: The past 3 months have definitely been a pretty dramatic change for us. Both girls are at higher risk for infection, so we have been and will continue to be very cautious about returning to what is our ‘normal’ life. We are worried about what the school system will look like post-pandemic. We are concerned that the special ed program where we live will look very different and will present even more challenges for the girls’ education. We’ve been spending our days at home (not surprisingly), and certainly have had some wonderful time together we wouldn’t normally have. It’s also shown me what I already knew, that my wife is a complete rock star of a mom. She has become the girls’ teacher as well and she is awesome at it. It has also been completely exhausting. It was already difficult for us to leave the house in normal times, so now we are feeling even more shut-in. It can create a sense of isolation and depression that can be overwhelming at times.

MTEAM: What key changes would make this a more inclusive world for your daughters.

GREG: I feel like we live in a day and age with a real lack of empathy for each other. Either the inability (or unwillingness) to try and see the world through someone else’s lens. Try and understand what their world is like and not project opinions when you have real lack of knowledge and understanding of someone’s daily life. One of our on-going and daily battles is schooling. Through the years the girls have had a few great teachers and a number of great one-one aides. However, we’ve also had (and continue to have) staff, teachers, administrators who have no expectations of kids with disabilities. We need school districts to stop treating the disabled community and special education like a program they have to have because it’s required by law. It needs to be treated with the same expectation, care, and resources all kids get in the school system. 

MTEAM: What do you love most about being Alli’s and Emma's Dad?

GREG: Being a Dad has brought an entirely different level of love into my life.  When these 2 young ladies smile at me, laugh at ridiculous noises I make or dumb jokes I tell, my heart melts. I think (hope) they have taught me a level of empathy and compassion I didn’t know I had. I also love that they bring so much joy into so many other people’s lives. I also get to have quiet, personal moments with each girl that most Dads of teenagers probably don’t get. Whether it’s reading and snuggling with Alli or laying on the floor next to Emma trying to undo the strings she’s knotted around multiple toys while she laughs at me, these are pretty special moments.

The MTeam is a Best Buddies Challenge team of cyclists, runners, and walkers that was established in 2016.  It came together out of a desire to raise awareness and funds for the Lewis family who have a daughter, Meredith, or MerBer as her dad calls her. She is the MTeam's Chief Motivating Officer. Her smiles keep the team riding, running, and walking to bring awareness to FOXG1, the rare genetic disorder with which she was born. Our team motto is #MilesForSmiles, because once you are rewarded with one of Mer’s smiles, your heart will be full and you will work that much harder to support the many wonderful people Best Buddies reaches.

Meet FOXG1 Mom, Angie Van Wingerden : 10 By MTeam cares

Meet Angie, mom to Eila and twin brothers Jack and Willem. Inspired to contribute her skills toward creating a better life for Eila who was born with a rare genetic condition called FOXG1, Angie volunteers as the CFO and Head of Operations for the FOXG1 Research Foundation.

Below, Angie tells us more about her work with the Foundation, shares a few stories of life with Elia and talks about what it’s like - both the challenges and the rewards - to be a mom to a child with special needs.

MTEAM: Tell us a bit about yourself and your family.
ANGIE WINGERDEN: Hi, I am Angie, mom to Eila who is 15-years -old and has FOXG1 syndrome.  We live just outside Ottawa, Ontario, in Canada. Eila has twin brothers - Jack and Willem who are turning 11, and dad Jeremy, along with our dog Fergus and some chickens. We spend a lot of time living outdoors enjoying nature and our country setting.

MTEAM: You’re the CFO and Head of Operations for the FOXG1 Research Foundation. What led you to become involved in this organization and why is it important to you? 
AW: Yes, I am the CFO for FOXG1 Research Foundation, a new role to me just last fall. It came about when I volunteered my time to help them plan the Science Symposium in San Diego last November. See, I am an event planner by day and I believe in sharing my skillset to give back to our FOXG1 community. No one is as passionate as a parent with a child afflicted with this syndrome, and it makes me feel good to be doing my part to help our kids. I had watched closely the impact this new foundation was having globally to fundraise and then fund research and being a passionate mom to a child with FOXG1 syndrome, I knew there was an opportunity to help.  When they asked me after the symposium to join the board, it just made sense to continue my efforts to help any way I could.

MTEAM: For those who have never heard of FOXG1, can you help us understand a bit about what it is and how it manifests itself? How has this condition touched your own life and perhaps even changed the course of it? 
AW: No parent is ever prepared for a non-typical baby experience. Especially as a first time parent, you are learning so much as it is, as it is all new to you. You blissfully think it will be just like you see all around you, snuggles, dirty diapers, burping, play, sitting, walking, talking. Then to have a baby that cries in an inconsolable way for days on end, and to watch that baby not learn typical skills like sitting up, reaching and grabbing to play with objects, or even smiling and laughing is very hard. To spend 11 years watching them never typically develop and be poked to have blood, skin, and muscle samples taken to try to find the answer? We were grateful to have found our answer, even if it took 11 years, because now we are part of this community who share similar stories of challenges and tips to support each other! Because this is a neurological syndrome, it effects Eila's entire body system. She is non-mobile, using a wheelchair to get around; she is non verbal, we have never heard the words “I love you”; she has sleep disturbances, feeding difficulties, lots of GI issues, eye sight issues, anything that requires a message from the brain to muscle movement is difficult. I have grieved. I have celebrated. We have made big compromises in how and where we raise our family to make caring for our daughter a lifetime commitment. It is not the mom life I would have expected, but it really is rewarding and I can't imagine it any differently.

MTEAM: What is a typical day at the FOXG1 Research Foundation like for you?
AW: Each of our roles at the foundation are volunteer, which means I balance full time work and parent life along with the duties of the foundation. It can be tricky, but luckily it can be fit in any day or time of the day as needed. I maintain bookkeeping records for the foundation, provide monthly financial reports for each board meeting, work with an accountant to produce year end financial statements and the annual report. I also assist with fundraising efforts, donor relationships and communication and assist our Canadian families with completing the FOXG1 syndrome Patient Registry.

FOXG1 Family stories

MTEAM: Tell us a bit more about Eila and her personality! (How old is she? What does she love most? What makes her happy? What makes her uniquely Eila??)
AW: Eila is a happy-go-lucky girl; similar to the other stories you have shared, her smile and laughter can fill a room! She has a magnetic personality that others are drawn to. She is a social butterfly and loves school. She loves to use her walking frame to travel through the halls and cafeteria and seems to especially like visiting the weight room to watch the boys and listen to their tunes blaring. Typical teen :) She loves music, all kinds.  She loves books and movies, and a good joke!

MTEAM: What’s one thing you’re proud of having accomplished through the FOXG1 Research Foundation so far? 
AW: I'm proud to have been welcomed so warmly into this group of dedicated, powerful, resilient women, to be part of a small team leading great things happening globally for the future of our kids. It's an exciting place to be right now. Things are happening so fast for the better of our kids.

MTEAM: What have been some of your biggest challenges and the best rewards along your journey with FOXG1 so far (ether with Eila or through your work)? 
AW: Biggest challenges have been watching my child in distress and not knowing how to help her. It is painful to not be able to understand without words what is going on in her body that can cause such discomfort and try to solve it. Every day is a reward with Eila. I have watched her brothers growing into compassionate young boys with such big hearts. I have been privileged to employ and work alongside some amazing people in our community, who dedicate their life to working with children with special needs. I have seen the community rally and support us with awareness events and fundraisers when it came to needing equipment and other items. It really does take a village, and I am thankful for ours.

MTEAM: What advice would you offer to other parents who are just finding out about a similar diagnosis? How can they advocate for their own children? What resources do they have available to them either through the FOXG1 Research Foundation or elsewhere? 
AW: I would want other parents to know we have all lived it or are living it. The family group on Facebook is a great resource to ask questions and look for support. We have a FOXG1 Research Parents Connect Group on Facebook to discuss the research and more. Our foundation has initiated a caregiver committee and a special fund to assist caregivers in need.  We have already sent caregiving packages to parents in hospital with their sick child, and started a resource file for families looking for therapy, camps, support groups, other resources in their areas. They are working on lots of great ideas for the future to lessen the burden, help caregivers, and know they are supported by our community.

MTEAM: What are some of the key changes that would make the world a more inclusive place for children born with FOXG1? 
AW: Access to consistent, available therapy, assisted devices and equipment. These things are all very expensive. For the average family, to be able to provide them to watch their child succeed is impossible!

MTEAM: If there was one thing you’d most like the world to know or understand about Eila or about FOXG1 generally, what would it be? 
AW: Eila and children like her are trapped in a body that can't express themselves the way they would like. To remember that is key; treat them with dignity and respect, always assume competency. Like every human, they want friendship, someone to listen and love them back.