Mommas are superheroes.
All of them.
Think about it. From birth of baby to keeping them alive through their 18th birthday (and sometimes beyond)… feeding, changing, entertaining, driving, loving, teaching, talking to, listening to, participating with, crying for, praying for…
Now, imagine being the mother of a special needs child. Where daily living is completely different than the norm. Where real life problems ARE the norm. Where loving fiercely can do nothing to change the circumstances. These mothers are there without demanding recognition or awards. The only thing they want is to give their child the normal, healthy, and happy life they deserve.
Meet Tammy Leonard. Tammy is one of these moms. I found her through her Instagram account, The Gifted Wreath. She has a special needs son, Luke, who suffers from Friedreich’s Ataxia. FA is a rare, progressive, life shortening nerve disorder. Below you’ll learn a little more about Luke and what you can do to help raise awareness for FA.
You have a boy and a girl. Tell me a little about them.
My son, Luke, is probably the most mellow and reserved kid you’ll ever meet. He is usually content and just goes with the flow. This is a very cool trait for him to have, as he battles with his rare disorder. He has been exposed to so many trials from an early age that he is virtually fearless when it comes to most things.
My daughter, however, is arguably the opposite. She thrives off of attention. She will light up a room with her bubbly personality the moment she walks in. She has a larger than life personality and keeps us all on the edge of our seats. I love this about her. It’s a blessing to have the best of both worlds from my kids.
Luke’s illness is called Freidriech’s Ataxia. Tell me some more about FA and what his day is like struggling with it.
FA in a nutshell is a rare, debilitating, and progressive nerve disorder. Some of FA’s symptoms are: loss of coordination, extreme fatigue, aggressive scoliosis, life threatening heart condition, vision impairments, hearing loss, and slurred speech. However, FA does not affect the mind. Luke unfortunately struggles with every symptom listed above.
What causes FA?
FA is a rare genetic disorder. It is caused by a defect in a gene labeled FXN, which carries protein called frataxin. Individuals with FA do not get the proper frataxin the body needs to function accordingly. Both parents each have to have the mutated gene in order for the disease to be inherited.
What does a typical day look like for you and your children.
Luke is 16, and is now fully wheelchair bound. He has to have assistance in everything he does; Such as getting dressed, transferring from the bed to his chair, toileting, feeding, showering, etc. Most kids at 16 are driving, dating, and working. Luke’s day is filled with therapy and doctor appointments, personal aid 24 hours, and depends on handicap accommodations.
How difficult is it to juggle being a mom and a business owner.
Believe it or not, it has actually been fairly easy for me to juggle because of my situation. The advantage to being a business owner from home is that I get to control my business operation and how it functions. Because I have a special needs child, it was important for me to be able to stay at home with my son and to schedule my work around his needs. I wouldn’t have been able to have this type of flexibility working somewhere else. Owning a small shop has given me the opportunity to be able to work, and to be able to still take care of my children all under one roof.
How do you cope personally when your child is suffering?
I wish I could say coping is easy, but it’s truthfully not. There is nothing that will take away your sadness or pain completely. It will always be where you allow it to be; either on the surface of your thoughts or in the back of your mind. There is no way of getting around your emotions. It’s part of our humanity. Somedays will obviously be better than others, but having the right mindset is the key to coping. By faith in the Lord Jesus, I have been set free from the bondage of sin and the desire to live in the flesh. I have faith that every part of my human being is in God’s hands and that he will take care of me and my son (and family), and I am forever grateful for the peace, comfort, hope, healing, and most importantly salvation He promises to those who believe in Him. The things of this world are so heavy, but God has graciously lifted the weight off of me with his infinite love and merciful ways. Having a personal relationship with the Lord is like walking with your best friend everyday. Although life circumstances don’t always go the way you want them to, it is possible to LIVE in peace with Christ. Your perspective on life positively changes when you have hope in Jesus Christ.
Tell me about The Gifted Wreath and how you started it to raise awareness. Have you had a good response from people?
I created The Gifted Wreath in 2017. It was at this time that my son became wheelchair bound. I was an emotional wreck to say the least. I knew I had to do something on Luke’s behalf to help fight his battle. FA is so rare and progressive, that raising awareness is extremely urgent if we want to see a cure in the near future. I knew getting the word out about The Friedreich’s Ataxia Research Alliance (FARA) was going to be crucial. FARA is a non profit 501 © organization dedicated to funding and providing research to cure FA. Clinical trials can cost as much as 2 million dollars, so raising funds is vital for keeping research continuing. For the past four years, grassroot fundraisers such as The Gifted Wreath have collectively raised over a million dollars for research surpassing FARA’s annual goal of Mission 1 Million. This is absolutely incredible!
I am beyond blessed with the outpouring love and support I have received from my small shop for a cure. In just three years, my customers have contributed to raising over 20k in revenue and shipping nearly 600 wreaths across the United States! Creating a community through this business and outreaching for a cure has been the highlight of The Gifted Wreath and is what makes us unique from other small shops in our niche. There are so many wonderful shops and charities out there very deserving of success. I am moved and humbled to be a contender amongst those incredible shops and very grateful to have been able to establish such an amazing and supportive community of customers who have opened their hearts and home to my cause. I am excited to see where this will lead us in 2020.
Knowledge is power. What can we do to learn more and help?
There are so many promising studies taking place in FARA’s clinical trial pipeline. You can learn more about the advancement in research and ways to donate by visiting www.curefa.org. I will also be updating any breakthroughs in research, sharing behind the scenes shop updates, and flash sales on my new blog by visiting The Gifted Wreath.
What is your best piece of advice for moms with special needs children.
My advice for moms with special needs children is, to be ok with asking for help. I think moms can get caught up in the stigma of “if I ask for help then that means I am a failure. I should be able to handle all of this on my own.” Or, “I don’t want to bother anyone by asking for their help.” At least, that’s how I used to feel. Once you establish a core support of helpers that are available whenever you need them, it really is a game changer. I think just knowing there is someone available if you were to need them, takes the pressure off of thinking you are doing more than you can physically and emotionally handle.
Thank you so much, Tammy!
You can find Tammy on Instagram , Facebook, on her Website, and you can find out more about Friedreich's Ataxia and how you can help here.