cysticfibrosismom

I'm just a regular mom, figuring out life with my daughter Sophia, who has cystic fibrosis.Take this journey with me.

The Secret Garden and Cystic Fibrosis

4 Comments

Growing up, I had fond memories of reading The Secret Garden. It captured my imagination. I could picture the wild garden, locked up for years, waiting to be discovered. Every rose petal, every robin’s nest, every blade of grass, every butterfly, was etched in my mind. I could smell the flowers, feel the sun’s heat as I imagined this wonderful secret garden.

A quick recap: Mary Lennox is an ornery girl who goes to live with her uncle after her parents die. She plays on the moors by herself, until she meets Dickon, a quiet and friendly boy who knows a thing or two about gardening. They share the secret garden together. A small and sickly boy named Colin is found crying in one of the rooms. Mary befriends him and introduces him to the garden, where his health improves.

Recently I started pondering the connection between that story and my life today. As you know, I am immersed in the world of cystic fibrosis. I seek to understand what the researchers are studying, and how that knowledge will improve lives. After re-reading The Secret Garden I felt that the analogy to our current understanding of the human body was too cool to ignore. I can’t claim that it’s a perfect analogy, but I like it. Bear with me as I try to explain what’s in my head.

Decades ago, our genetic makeup was poorly understood. Like the Secret Garden, scientists believed genetic diseases to be too complicated to sort out. At first Mary ignores the garden, and plays outside on the moors. As Mary begins to develop an appreciation for the sultry beauty of the moors, and becomes more comfortable exploring her simple surroundings, she gains clarity. Every hill has its place. Every blade of grass follows a pattern. This environment is like the human body- we too are seemingly random, yet greatly ordered.

Once the building blocks of the moors are better understood, the wild garden becomes less daunting. It’s no longer a web of tangled vines and weeds, but rather contains beautiful and intricate regularity. The moors contain our body systems, the garden is our genetic makeup. Less than 3 decades after DNA’s double helix is discovered, a gene responsible for causing cystic fibrosis is found. Interest in genetic research around cystic fibrosis picks up. Mary has a new friend, Dickon, who helps her tame the garden. Few are in this exclusive club, but bit by bit the weeds are being cleared. Those early researchers were faced with a huge challenge. Their ability to see beyond the chaos, to work through the uncertainty, is what has led to success in understanding genetic diseases.

Colin, a small boy confined to a wheelchair, is like the CFTR protein in cystic fibrosis. His weak and poorly formed legs limit him from running with his peers. He sits awkwardly in the Secret Garden, unable to climb the highest tree. The CFTR protein also sits awkwardly, unable to function effectively. Both have the potential to work properly, but there’s work to be done. Until the beauty of the garden can be fully appreciated, the undiscovered sections will lie in waste.  Why can’t Colin explore every corner of the garden? A simple question with a complicated answer.

If Colin’s only limitation is his ability to unlock and open the gate, then researchers have found the key. If he can run boldly to the gate, then the key is truly all he needs. Unfortunately there are few with problems so ‘easy’ to treat. Less than 5% of those with cystic fibrosis have a CFTR deficiency like this, where the protein works properly but cannot pass through the ‘gate’. Most of the time the protein itself is abnormal. It cannot effectively interact with its surroundings. Just like Colin, with weaknesses and malformations that keep him from reaching the gate at all. The key’s discovery falls short of a miracle for him. Scientists are working hard to find a cure, so that he may one day stand up from his wheelchair, run out the gate and into his father’s waiting arms. I hope with all my heart that researchers are close to discovering a treatment for Sophia’s CFTR mutation. If she never struggles to breathe, then my dreams have come true.

Advertisements

4 thoughts on “The Secret Garden and Cystic Fibrosis

  1. Your reflections are interesting & worth reading. Your explanation of the CFTR protein is easy to understand & unique!

    Researchers continue to search for the recipe to correct that protein. ARE WE THERE YET? LET’S HOPE & PRAY – SOON!

  2. Beautiful analogy … and we share the same dream.
    The Secret Garden was made into a movie as well.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s