Aliviah 's Journey

 And though she be but little, she is fierce. —Shakespeare   Angela Schwindt said, “While we try to teach our children all about life, our children teach us what life is all about.”  I believe this is true. I have learned so much from children; I have learned so much from this child. She is my Livi Lou, or sometimes, Biscuit. I am her MiMi. And this is our story. They say you don’t know real love until you have children. While that may be true, I think the love you discover when you have grandchildren is an even more spectacular love—bigger than any other. I know this. I know this because I love my granddaughter, Aliviah, more than anyone I’ve ever loved before—in a way I’ve never loved before.

My granddaughter is magnetic, irresistible—she leaves an impact on everyone she comes into contact with. Strangers are drawn to her, immediately curious to know more about the fierce, little beauty that she is. This is because she radiates joy—a magical, palpable joy. Unfortunately, for me, she also radiates sorrow, and this is why:

Facts

Aliviah was born with a rare congenital defect—heterotaxia, which means her major visceral organs were distributed abnormally within the chest and abdomen. In addition, she suffers from a rare heart defect—a single complicate ventricle, which is so rare it accounts for less than 1% of all congenital heart diseases. Aliviah also has pulmonary stenosis, lives without a spleen and has severe scoliosis. Her spine was formed with not enough vertebrae on one side, and too many on the other. She also has two additional ribs, which causes her restrictive lung disease. One of her lungs functions at only 25%.

My 8-year-old granddaughter takes ten medications every day. She uses two different inhalers, as well as a nebulizer, every day, to help with her breathing. She cannot walk for long periods of time or participate in activities like a typical child would.

She has many doctor’s appointments every month and has had several hospitalizations, procedures, and surgeries, including open heart and cardiac catheterizations, in her short life.

Now

Aliviah is 8-years-old and  (average weight is around 58 pounds), suffering from failure to thrive. Failure to thrive is defined as decelerated or arrested physical growth (height and weight measurements fall below the third or fifth percentile, or a downward change in growth across two major growth percentiles) and is associated with abnormal growth and development.

I move through my days constantly thinking, worrying, about Aliviah. I think about her dreams—to meet the cast of Grey’s Anatomy, to be a ballet dancer, and one day, a doctor. I am in awe of her strength, courage, and wisdom. Wise beyond her years, as they say.

Aliviah can recite the names of her many medical conditions, as well as all her medications and when she takes them. She discusses her treatment plan, as well as most things in life, like an adult. I tell her she acts like a teenager, to which she says, “Yup. Eight going on eighteen.”

But Aliviah is not an adult, and eighteen is far away. She is a child. A child with dreams and hope and innocence. And I’m asking for your help, but I am not alone. Myself, along with her mother—my daughter, Breann—need support in order to give Aliviah a fighting chance. While I may be the one writing this, my daughter’s plea is just as strong. It wouldn’t be fair to write this without acknowledging Breann’s resilience and strength through this process. She remains strong for her baby, despite her greatest fears. Breann was told that Aliviah’s life expectancy may only be 25-40. That is not good enough. Every day she wonders about her little girl’s mortality, but every day she preservers. It’s amazing to see.

By now you may be wondering where Aliviah’s fate lies. Well, we don’t know. But what we do know is that there are doctors at the Boston Children’s Hospital ready to provide Aliviah with the treatment she needs to survive. Few hospitals in the world see as many pediatric patients with scoliosis and other spinal conditions as the Orthopedic Center’s Spinal Program at Boston Children’s Hospital. These doctors are the best out there—and the only ones on the east coast that perform the types of surgeries she needs. So, to Boston we go.

“I have mixed feelings about going to Boston,” Aliviah says. “At least now when the teacher says, ‘sit up straight,’ I can,” she jokes. Her spirit shines despite any dark clouds of fear lingering above her. She is scared, but her desire to stop hurting and stand up straight overpowers her fear. We have fear, too. But more than that, we have hope. And this is what’s to come:

The Near Future April 9th—Pre-surgical testing in Boston.  

April 17th—Halo placement to stretch her spine. Once placed, Aliviah will remain in the Boston Children’s Hospital to be monitored until the spinal surgery (four weeks ) . From Spine-Health.com: A halo is a medical device used to stabilize the cervical spine after traumatic injuries to the neck, or after spine surgery. The apparatus consists of a halo vest, stabilization bars, and a metal ring encircling the patient's head and fixated to the skull with multiple pins. The metal pins push up to the skull and not into it. They are placed opposite one another giving counter force and resulting in very firm fixation to the skull. The pin sites require daily cleaning to keep from becoming superficially infected.  

May 17th—Spinal surgery, where growing rods will be placed to help correct Aliviah’s spinal deformity. Once this is corrected, her lungs will have more space to grow. She will stay in the hospital for at least a few weeks, and will return for follow ups to adjust the rods as she grows. The cardiologist will be present for this surgery, as there is a risk of her throwing a clot and having a stroke.

And within a year she will have open heart surgery.

We will incur many expenses when we go to Boston for Aliviah’s treatment—travel, lodging, parking fees, and food. We are hoping to rent an apartment or Airbnb so that we can keep the family together as much as possible (Breann has a fiancé and three other children, among other family members who want to be by Aliviah’s side during her many weeks of treatment and recovery). The housing through the hospital and is not guaranteed, nor can it accommodate more than four family members, and Aliviah will not go through this alone. We have promised her this, and we will keep our promise.

How You Can Help

Having a family member with complicated medical issues is difficult for anyone going through it. But it is even more difficult when that family member is a child. Aliviah doesn’t understand the magnitude of what is happening to her, nor do her siblings. They don’t understand why she is sick all the time, always asking, “Will she be okay?”

But we don’t know. All we know right now is that we feel blessed to have found the best doctors in the country at Boston Children’s Hospital. There is no other option. These doctors will give Aliviah the fighting chance she deserves, but the distance and time away will take a toll on her and on her family—on us—emotionally and unfortunately, financially, which is why I’m here. I’m here because I’m asking for your help. This won’t be easy—this much I know. But you can help make it easier. Anything helps. Anything.

My granddaughter, I truly believe, is a gift from God. Not just for me; not just for my daughter—but for everyone she meets. And as Shakespeare wrote, though she be but little, she is fierce.

Please share this link on your Facebook, Twitter, any social media—and help me get the word out to save Aliviah. Thank you.   “In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it's wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.” –Elizabeth Gilbert.