10 Minutes with: April Mullen
Meet April, mom to Kian, his brother Luke, and a second brother on the way! Kian, like Meredith—the “M” in our MTeam—was born with FOXG1, and is one of only two people in Ireland diagnosed with this rare neurodevelopmental disorder. Below, April shares some of the challenges Kian struggles with every day, but also the many joys in his life, the happiness he spreads to others, and why her and her husband Rob are proud of Kian each and every day. She also talks about one of the key changes that would make the world a more inclusive place for Kian (not to mention many, many other families).
MTEAM: Tell us a bit about yourself and your family
APRIL MULLEN: Hello, my name is April Mullen. I was born and raised in Cobh, Co. Cork, Ireland. I have lived here all my life. I have two beautiful boys: Kian (5) and Luke (4). I am currently 30 weeks pregnant with our third child, another boy!! I’m completely outnumbered in my house, but that’s ok; boys love their mommies!!! My husband’s name is Rob and we live a pretty normal life, for the most part.
MTEAM: Your son Kian was born with FOXG1. Can you explain what that means to anyone who is hearing of this for the first time? How has it manifested itself in Kian’s life specifically.
AM: For those who aren’t aware of Foxg1, it is a neurodevelopmental disorder caused by a mutation/deletion of the foxg1 gene. The loss/mutation of this gene impacts the brain’s development and function. The condition can present with seizures, inability to control body movement, and lack of speech to name a few. Many children cannot walk or talk and struggle with everyday life.
For Kian, foxg1 means he cannot walk or talk and is tube fed. He needs 24/7 care. He can sit with assistance and can walk in a rifton walker, which he is strapped into. This gives him a lot of independence.
MTEAM: Tell us more about Kian! (How old is he? What does he love most? What makes him happy? What makes him uniquely Kian?)
AM: Kian was born on 21st February 2014 after a 25 hour labour. He was our first child and so everything was new and exciting. Kian passed all his newborn checks and we took him home excited, yet a little daunted, by what lay ahead. From the get-go, things didn’t go smoothly. Kian cried a lot and his sleeping was horrendous. For the first five months of his life it was a complete guessing game. We went to our doctor and reflux was diagnosed, but even with medication things still didn’t improve. He was very tight and floppy ,and eventually Kain was diagnosed at six months with Foxg1.
Kian is a very happy child now. This is one the main characteristics of foxg1; our children have the brightest, biggest smiles. Kian absolutely loves music, whether he is listening to it, I’m singing to him, or he is playing with a musical toy. His face completely lights up and it’s such a joy to see him so happy. Kian just loves life in general. He is a very happy child, as I’ve mentioned, and gives everything a 100%. He adores his granddad and they can sit and chat for hours.
MTEAM: What is a typical day in Kian’s life like?
AM: A typical day in our life can vary, but for the most part we are like any other family. We get up have breakfast and start the day. My youngest Luke is in preschool and Kian just started Junior Infants in a special needs school. There are days when we have appointments with Kian, such as an eye specialist or therapies. We are just like any other family, but instead of taking Kian to after school sports, etc, we attend doctor appointments or physical therapy.
MTEAM: What have been some of the biggest challenges you’ve faced along your journey with Kian so far?
AM: The biggest challenge both myself and my husband face is the unknown. We don’t know what the future holds for Kian and that is a scary thing. It is very hard to watch your child struggle with everyday life and not have a miracle cure to solve all his adversities. Because foxg1 is so rare (there are only 486 diagnosed cases in the world and Kian is only 1 of 2 cases in Ireland), life can be daunting. The other major challenge we find hard is the fact that Kian is non-verbal. When he is unwell, it’s a complete guessing game on what potentially is causing him to feel pain/upset.
MTEAM: Share a memory of one of the times you’ve been especially proud of Kian.
AM: I don’t have one particular proud moment as both myself and Rob as parents are extremely proud of Kian all the time and the way in which he just gives life 100%, the way he tries his best to interact with people, and the way he lights up a room with his smile and just draws everyone to him. Anyone who meets Kian is immediately impacted by him and just melts.
MTEAM: What sort of advice would you give to parents who are finding out about a FOXG1 diagnosis for the first time?
AM: Finding out that your child has foxg1, or any disability, is a complete shock to the system. You have a pre-designed life planned for your child, and when this is thrown into chaos with a diagnosis. This can be very hard to deal with. I would advise any new parent whose child is diagnosed with foxg1 to cry, mourn the life you had designed for your child, and find a way forward. Take every day as it comes and trust your gut. A mother’s intuition is never wrong in my eyes and it has served me well so far. Video tape anything that you think is out of the ordinary and reach out to other parents/families of children with the condition as their knowledge is second to none.
MTEAM: What would you say to anyone who has an opportunity to meet someone with FOXG1 (or others with different abilities) for the first time but feels a lack of confidence about how to interact with that person?
AM: Well, from my experience of people meeting Kian for the first time, they generally treat him like any other child. I think I’m more nervous as you feel you need to explain everything, like the fact that he is non-verbal, or it may take him sometime to look at you, etc. People tend to get down to his level and talk to him like he’s a normal human being. So I suppose my advice would be not to treat them any differently and don’t be afraid to ask questions; we won’t be offended.
MTEAM: What’s one thing you’d like to the world to know about Kian?
AM: The one thing I’d like the world to know about Kian is that even though he has limitations, on the whole he is like any other child, loves cuddles, loves playing with toys, loves music, and loves being around people. Just like the rest of us, he has his moments were he likes his own space, will act up, and have an attitude.
MTEAM: What key changes do you think would make this a more inclusive world for Kian?
AM: What would make this a more inclusive world for Kian—and it may sound simple, but it’s something we struggle with in Ireland—is as simple as having an accessible public bathroom installed everywhere. You can feel very isolated as a special needs parent at times and making it easier to access certain basic needs when you decide to take the leap and venture out would go a long way. Here in Ireland, an accessible toilet is just a toilet with handrails. This unfortunately does not meet Kian’s needs, he is incontinent and always will be, and therefore a changing table (not a baby one) and hoist is the only thing that can accommodate us. I have had to change Kian on a toilet floor and the booth of our car, which is distressing for both of us.