When we learn that we are going to be having a child we pray that our child will be healthy, happy and beautiful. When the child is first placed in our arms we take a moment to look them deeply in the eyes, connect with them, and then, we unfurl the blanket and count the babies fingers and toes. Counting ten of each we take a deep sigh of relief in the belief that our child is healthy.
And most of the time they are. But what of the ones that are born with unseen disorders? They are happy, they are beautiful, but they have struggles beyond those we envisioned for them. These children sometimes need a community of people to come together in the fight for a future. And that is what today’s post is about. Today I am thankful that my son was born healthy. And I am asking that those of you with healthy children be grateful for what you were blessed with, give your children the hugs, the kisses, and the positive attention they deserve. And if you can, maybe you can give an additional gift to a child you do not know. A child like that of my friend…
Madighan was born with all her fingers and toes, she is adorable, spunky, and delightful with a firecracker of a mind that matches her explosive energy. You only need to meet this little munchkin once to fall in love with her. At first glance you’d think she was small but disregard it as nothing. However, the reality is that Maddie was born with Turner Syndrome. And now the news has gotten worse. Maddie has recently been diagnosed with cancer.
Let’s start with an explanation of Turner Syndrome because this is something she will struggle with her entire life. Turner Syndrome is a chromosomal anomaly present only in females, and here’s why: Babies are usually born with 23 pairs of chromosomes. One pair of chromosomes determines the baby’s sex. The mother always contribute an X chromosome. The father can contribute either an X or a Y, thus determining the sex of the child. Boys have an XY chromosome pair. Healthy females have the XX chromosome pair. What makes a Turner child different is that she may be missing all or part of the father’s chromosomal offering. Therefore she will always be a girl (because of the mother’s X chromosome).
Girls who are born with Turner Syndrome have many biological issues that they will face throughout their developing years, some are minor while others are significant. Maddie’s cancer is a complication of the Turners syndrome. It is malignant and without treatment and surgery it will continue to progress.
Here’s the low down, rather than being born with ovaries, Maddie has what is referred to as bilateral gonadal streaks (this is the tissue that should have formed into ovaries while she was in utero). These tissues can occasionally develop cancerous tumors, and in Maddie’s case, they have. She currently has stage 2 Gonadoblastoma (stage 2 is good news, it means the cancer remains localized at this time and has not infected other parts of her body).
The bad news is that the insurance company refuses to pay for any treatment of the cancer citing it as a “pre-existing condition” even though six months ago she was cancer free and the likelihood of developing cancer was only slightly higher for her than for any person her age. Nonetheless, the insurance companies won’t help and my friend and her family are facing mounting medical bills. Bills for the Turners specialists, bills for a cardiac doctor, bills to cover specialized nutritionists, bills to cover the cancer docs, bills to cover all of the extensive exams, medications, treatments and upcoming surgery… it’s expensive and it is necessary.
If you are thankful for your own healthy babies and want to help others but don’t know how, consider helping our dear Madighan. She is six years old. It is true she will never have children of her own, but she can have a life, with our help. Please visit her gofundme campaign, even if you can only donate a dollar or two, it will help, and all of us who love her will be forever grateful and you’ll know in your heart that you have done something wonderful for someone, just because.
She is a bright, funny, charming girl full of love and light. Her tears and her smiles melt hearts and inspire action. She is tough as nails and gentle as a cat’s whiskers. She is a ninja, a princess and a ballerina. She is such a delightful person to have in my life and I feel thankful and blessed for every day I get to kiss her face, feel her hugs and snuggle with my cuddle-bear.
She has no birthday this year which just adds to her rarity and uniqueness.
So happy birthday to my leap year baby, Madighan Blaire. Daddy loves you.
Now go give your little ones, your husband, your wife a hug and a kiss, tell them you love them, and stay well.