Today I continue my A Day in the Life series, which started so wonderfully by a conversation with Christa Sterken about fibromyalgia. I am talking today with Colleen English about her daughter Claire, who has Rett Syndrome, or RTT.
Rett Syndrome is a rare genetic disorder that primarily affects girls. It limits how the synapses in the brain connect. This leaves them with severe motor challenges. Most have little purposeful hand use, are completely non-verbal and require assistance if they can walk. Along with the severe apraxia comes scoliosis, seizures and GI issues. Not every child with RTT has all of those however they are common across the population.
Girls with RTT like Claire are born healthy and develop typically for the first year
We had no idea that anything was amiss until she was 14 months old. After batteries of testing, blood, urine, MRIs she was diagnosed 2 weeks before she turned 2.
She fed herself birthday cake that year and continued to feed herself until Thanksgiving. Thanksgiving dinner, 2007 was the last time she fed herself, the next morning she woke up and her hands just went together and she stared at her food. She was also 2, going through a sensory hell along with the loss of use and was pissed off for a few years. If you would like more details on the Rett Syndrome, click here.
Now this sounds very scientific, but let me break down what it would mean as a parent. You have a daughter, and she is beautiful. But…and this is a HUGE but…
she cannot talk…she cannot walk…she cannot use her hands well…plus she has seizures.
Put yourself in Colleen’s shoes for a moment. The changes you would have to undertake just to get through each day would be momentous. It would be so easy to despair and fear nothing would ever get better. Especially when there is no known medicinal cure yet, only clinical trials not covered by insurance and anything but cheap. I bet that is exactly what some parents of Rett Syndrome do: despair, lose hope, and just generally let this illness rule their lives.
This is not the stuff Colleen English is made of, and it is why she is one of my heroes. Colleen has fought every day for eight years for her daughter Claire. From school to friendships to clinical trials, she has championed her daughter’s cause. But she doesn’t just fight for her own family.
Colleen took it a step farther and created the Rettland Foundation, a not-for-profit organization that lowers the bar for other families to enroll their children in clinical trials.
Do you know ANYONE who would make a choice like this, to make a choice one day to just START a not-for-profit to help families across the nation? I know one, and we are about to talk with her now.
Rettland has two programs to support families:
- Rest Easy provides assistance for the screening visit for clinical trials, including hotels and a food allowance.
- Chloe’s Fund is named after Colleen’s daughter Chloe English, who dreams everyone can participate in clinical trials, regardless of economic ability.
Each day starts at the same time. Claire’s meds have to be given at 7:30. She needs to be stretched, dressed and fed before she can have her meds. Most weekdays she goes off to school or a respite facility. While she is there I try to do everything that I can’t do with her around –laundry, groceries, showers and my work with the foundation.
Most days there is an appointment around 3pm, either physical therapy or a specialist. After that we try to do something active if Claire has energy. Then we eat dinner, it takes an hour to feed Claire and do night time meds. Then we do night time stretching, rubbing skin and stories before bed. After the girls are asleep we get take out and collapse on the couch.
Through all of the activities of the day we are also facilitating Claire’s communication by asking questions and giving her a field of two to answer from with her eyes or arranging for her eye gaze computer to be accessible. Also, we are constantly watching to make sure she is breathing and watching for stiffness that needs to be corrected to avoid seizures.
People don’t see the quiet in the car when we go places. The silent tears when she is sad and I don’t know why.
Being in a wheel chair makes a lot of life hard –there are stairs just about everywhere. Nobody sees my heartbreak when I see other people on the beach, a place we can’t go with the wheel chair. On good days, I carry Claire down the 30+ steps to the beach to stand for a few minutes, that is one of her favorite things to be close to the water and I work hard to be able to carry her up and down there for that special time.
I wish people knew that while Claire does not speak she says volumes with her eyes and she is an expert in non-verbal communication.
The exhaustion is something that is often overlooked. People don’t realize the fatigue I have. Spoon feeding, diapering and listening to a baby monitor for 8 years with no sign that it will let up is so tiring.
She understands everything and makes the most of her circumstances much of the time. She chooses happiness. It does not come naturally or easily. Our family fights for it.
Claire is comfortable in public because we take the effort to give her those opportunities. Claire is mainstreamed and learning because I have advocated for her education.
She has typical friends and enjoys a rich life with opportunities not just to have friends but also to be one, which is a feat much bigger than most people realize.
God gave you her because He knew you were perfect for the job.
God won’t give you more than you can handle.
God only gives these special angels to special parents.
People assume Claire is happy because she is special needs. That sounds harsh, but people really don’t think through that she understands everything and can’t speak.
I want people to talk authentically. Not to start a conversation out of pity but out of empathy.
Others often think I don’t grieve every day. They often treat me like I should just be happy to have such a physically beautiful child.
A lot of people talk to Claire like a baby because she is non-verbal. She longs to articulate her thoughts, but not able to do so. Her eye gaze computer allows her limited access to expressive language, but she wants to say more.
People don’t often consider the intense sorrow of not being a typical eight-year-old girl but unable to speak. It is a lot like torture and hard for both of us on a daily basis.
While I don’t know I am thankful for RTT, I do know that it has exposed me to a much bigger side of God and a lot more beauty than I ever imagined.
Caring for someone this disabled is like seeing the face of God. My payment for this is something far greater than you will ever understand. There is something about caring for someone so fragile and so dependent that brings me face to face with the divine. I know God better because of the hard things.
God loves us but shit happens, sometimes in the form of random mutations.
I think today’s focus on comfort as the goal of life is misplaced, and if you find comfort, your life will not be rich. I just don’t know that God ever says easy is the path to what you want. When I read the Bible, easy is not in there.
I am so proud of Claire for not giving up and for pushing everyone around her. While she was on the treadmill –still working on her first independent steps at 8 years old –she let me know that she wanted to be in the clinical trial. Even though it meant missing a lot of fun, getting shots twice a day and a lot of travel, she wanted to try. I am so thankful that we have.
Her tenacity has affected those around her. All of her friends want a medicine for RTT too…but they want it for other families, not just ours. This is why we started the Rettland Foundation. Claire’s bravery has given us the ability to encourage others to be part of changing a degenerative disorder into something that is treatable with recent medical discoveries.
With the power of a few little girls and some lemonade stands we have already helped 13 families get to clinical trials, and we accelerated the completion of the first phase II clinical trial in RTT.
What questions or comments do you have for Colleen?
Christa, thank you for sharing both your story and part of Claire’s story. The Red Sox picture is fantastic! And I’m not even a Red Sox fan 😉
Chris, thank you for sharing this with us all as well.
Chris great interview and thanks for sharing and giving us more insight into the life of this child and her mom. We will never understand why God allows the things that appear unfair to us, but we can trust that He has a perfect plan and purpose. A plan not to harm us even when it sometimes feels like we are forgotten. Blessings and I am praying “joy beyond” the circumstance of life for this family. Brenda
Thank you for your prayers Brenda, we could all use joy beyond 🙂
As I have gotten to know Colleen over the past year, her drive to not settle for less-than for her family and her daughter continue to inspire me. Thanks Brenda for joining me (and I am sure so many others) in prayer for Claire and so many others like her.
I would love to mail you a free book I have written called “Joy Beyond.” If you will email me at firstname.lastname@example.org and send me your mailing address I will mail it out to you. My gift to you. God Bless Colleen! Brenda
Excellent interview Chris. Colleen, I am so grateful to you for sharing your story. Acknowledging how hard it really is, and giving credit to the beauty you see. I am changed today by your life, I mean that sincerely
Thank you for opening up your heart and your life to us here in this community. In case you didn’t already get this sense from our conversations, you are truly one of my heroes and an inspiration to me
Thank you Chris, I am truly honored, humbled and deeply touched to have our story shared and received like this.
Thank you Brenda I will email you soon.
Christa having been inspired by your story, I am deeply touched, thank you.
another brilliant entry in this series, chris.
colleen, thanks for sharing your journey with your daughter and the often overlooked struggles and joys of this life of yours.
Chris – Thank you so much for sharing more of this story. I’m incredibly proud of the work Colleen, her husband, and especially their girls have done. The smiles on the faces of the girls have stolen my heart.
“God loves us but shit happens, sometimes in the form of random mutations.” I took your challenge to tweet. My heart goes out to Colleen. As you know, I have a child with special needs. Through prayers and faith I made it through when no one else was there. My story turned out better than anyone ever expected. My daughter still struggles but is living in a supervised setting.
The phrases “God gave you her because He knew you were perfect for the job.
God won’t give you more than you can handle.
God only gives these special angels to special parents.”
are offensive to anyone who hears them. Another one is “You will have so many stones in your crown when you get to heaven” Well, if that was the case, I would not be able to hold my head up!
As Colleen stated, no one knows the tears and struggles behind the scenes at home. As a parent, I would have changed places to have a healthy child. I am sure Colleen would do the same if it helped. The hardest part is realizing you cannot always make it better. You do what you have to do.
Thank you for this series. My prayer is that people will reach out more to Colleen and her family.
No one knows why God allows such things. I do know that I am a better caring person because of my daughter. I can tell from this article that Colleen is also a better person.I admire her tenacity in advocating for her child and others.
In a follow-up video interview, I had the chance to meet the girls. So sweet!
Thanks for this series, Chris. It’s inspiring and humbling to read about others in very trying situations.
Colleen, thanks so much for opening up your life to share your story. I wasn’t familiar with Rett’s syndrome, but now I feel like I have an understanding of it. God bless you.
So glad you enjoyed it Jim. That picture was from Claire’s first baseball game, opening day at Fenway this year, so we had to get the hat 😉
Stephanie Pitcher Fishman
Thank you, Colleen, for sharing Claire’s story with us. I thank you for being an advocate not just for your daughter but for others. Thank you, Chris, for sharing her story!
Thank you for your interest and taking the time to learn about Rett Syndrome. Some day you will be able to say, “wait, I have heard of that” and you will really encourage that person, a lot!
You are welcome! And thank you for reading it 🙂
Thank you Rick and sorry about #allthesnot <3
Thank you Jeana. I forgot to add that one about the stones in the crown, oh it never helps when somebody says that!
Wow! Thanks Colleen for sharing your story… Now something I didn’t understand is clearer…and I’m amazed by what you’re doing to help others who are facing a similar situation. Praying for strength for you and your family Colleen.
Colleen, thank you for sharing the story of your beautiful daughter. God bless you.
Thanks for sharing some of your own story here. Can’t wait to share the rest later in this series
We all gain strength from seeing others’ resilience don’t we?
So beautiful! Colleen you are amazing and strong and brave. I am honored to know you and to have seen how far this has come in just one year. Love you so much and praying for you as you walk this journey!
What a strong and wonderful woman Colleen is. She fights daily with a hard struggle and seems to find some joy in it. She seems to accomplish a hard uphill battle every time she wakes up. She deeply loves her daughter and wants her to have the best life possible.
Or for those of use whose child’s disability is not manifested physically, there’s this killer phrase: “I don’t see anything wrong with her.” To which I reply, “Oh, there’s nothing *wrong* with her; she’s just autistic.” Or your child has an AS meltdown and they make judgemental comments about your parenting skills without having any clue about what is actually going on for the child.
I’m grateful for articles like this that help people understand!
Colleen, thank you for letting us peek into the challenges you face each and every day with this beautiful daughter you have. While you shared what statements were not helpful, but actually hurt, I wonder if you could share what kinds of things would encourage someone going through something similar.
I appreciate this series Chris. With more understanding we can better understand the struggles others face. And that will change barriers that we think are there. Thanks for doing this and educating us.
What a great question Anne! My short answer is that the best encouragement seems to come when people get their hands dirty. Like the lady from church that came to clean my bathrooms, the stranger that covered our hotel for the next time we go to the hospital in Boston and the friend that will sit in the coffee shop and just listen to whatever I have to say without trying to fix it. I just published a blog about this if you want to see my slightly longer answer http://rettland.com/2014/07/08/positive-assumptions/
Thank you Corie! Isn’t it surreal to see what’s come in a year, so thankful to have gotten to know you along this wild ride.
“I think today’s focus on comfort as the goal of life is misplaced, and if you find comfort, your life will not be rich. I just don’t know that God ever says easy is the path to what you want. When I read the Bible, easy is not in there.”
Agree. Yet we live in a word that seeks easy, clings to the path of least resistance. I’m so glad Jesus didn’t do that.
My love to Colleen and Claire. God does love us. And shit does happen. Wish everybody understood that….
Jenni my daughter has Ms and has over 30 lesions on her brain. Yet, I hear that all the time. “Oh Erin looks good she must Bo doing ok”
You can’t judge a persons condition by their outer appearance!!!
My other pet peeve? “Does she still have Ms?” “Is it really MS?”
Colleen, I don’t know about you, but the hardest one for me to reconcile is when people infer that if we had *enough* faith our daughter would be healed.
Who’s faith? Her faith? My faith? I’m still not sure. I see the same thing you see in the Bible–the way towards more of God is not always the easy way.
Things happen. God loves us. Of those two I am sure. And it’s enough.
Pamela, I still can’t believe that people suggest that problems like this are a result of lack of faith. That is just so small brained, what a narrow box to put God in. There isn’t enough time in the day for people that think like that as far as I am concerned. Can you tell it’s a sore spot…
I love your honesty and willingness to share your story. My heart broke reading it, but I was also touched and inspired by you and your amazing daughter!