The Warrior Fund
My beautiful nephew and godson, Luke Whitbeck, was recently diagnosed with Gaucher’s Disease (pronounced "go-shay"). Gaucher’s Disease is a rare hereditary condition that usually presents itself within the first year of life. Symptoms include enlarged liver and spleen, chronic anemia, fatigue, easy bruising, bone issues and the associated pain, and if gone untreated, the condition can be severely compromising and even fatal. For more on Gaucher’s:
One week after Luke’s diagnosis in February, he began what is and will be weekly treatment for the disease for the rest of his life. The treatment is an enzyme replacement therapy and is much like chemotherapy in the way it is administered—a port was surgically placed in his chest—and involves one day spent at the pediatric infusion center by the children's hospital for his infusion each week.
Reactions such as fever, hives, nausea, vomiting, itching, fatigue and headaches are among the common side effects experienced with enzyme replacement therapy. Luke has experienced most of them. Parker has recently accompanied Luke to a few infusions. He loves being there with Luke!
So far, Luke has been a real trooper. He’s taken in stride all the poking and prodding. Luke has made friends with the other children (and even one special "big guy" with Gaucher's!) receiving treatments at the infusion center, and knows all of the nurses by name!
We have so many things to be thankful for! First, Luke’s Gaucher’s is Type 1, which means THERE IS TREATMENT! And, with treatment and the proper care around it, he will live a long and happy life.
However, the medication he needs is a rare “Orphan Drug”. An Orphan Drug is a pharmaceutical that remains commercially undeveloped owing to limited potential for profitability. There are less than 60K people alive on the earth today with this condition, so it is not profitable for companies to develop the therapy. And, because of this status, the medication and associated costs are very expensive.
My sister Meg, and brother-in-law, Drew, are facing about $30,000 per year in medical expenses AFTER INSURANCE. They have applied for a financial assistance program from Genzyme Corporation, the maker of the drug that is used to treat Luke, and Drew's job (with the family business) has found a great health insurance plan. But, they still are facing a long future with heavy out-of-pocket medical expenses. They need our help.
We’ve decided to begin this campaign on Luke's second birthday! We are calling it "The Warrior Campaign" after Luke was donned the hashtag #warriorluke on social media. The name Warrior Luke has stuck! Please consider donating to this campaign. Please do it today. Your generosity will propel Drew, Meg, Parker and Luke forward with hope and peace.
Thank you so much for your prayers, love, and support.
Use the hashtag #warriorluke when you share The Warrior Campaign!
Luke continues to handle his treatments like a trooper. He is so strong! We do have a few small hurdles to overcome in the next few weeks and months. Here is the update:
Luke continues to have chronic pain. This is expected/typical in most cases of Gaucher's. After years of trying to manage with Tylenol and Motrin, we are seeking more help. Luke wakes up nightly in pain and it has started to slow him down during the day. Luke will see the Palliative Care and Pain Management Team at CCMC in Hartford at the end of March. That same week, he will have MRIs of his abdomen and femurs to get a good look at his organs and bone marrow. We will literally be able to "see" if the Cerezyme is doing its job. We expect to see better quality bone marrow this year as well as continued improvement in his liver and spleen (fewer Gaucher's cells). Please pray that this is what we see!
In addition to his pain, his physical therapist at school has noticed some gait changes and collapsing of his right foot/arch. Since bone issues are at the top of the list in terms of Gaucher's complications, we need to keep a very close eye on this. At his next check-in with the pediatrician, we will get a referral to an orthopedist.
Lastly, Luke has pretty significant reflux and a recent sleep study showed sleep apnea. There is literally no rest for this weary guy. We started a stronger reflux medicine in the hopes it helps with nighttime discomfort and sleep apnea. Since he had his adenoids out, we can't blame the sleep apnea on them. It is likely inflammation from reflux that is causing it. Or so we think.
In the big picture, Luke is OK. He will be OK. It is simply a tenacious battle to keep him strong, happy and comfortable. Any support you can give will be set aside in case he needs orthodics and for out of pocket costs for pain management. This includes his biweekly therapy appointments with a child social worker. Our awesome therapist is teaching Luke how to communicate and express his emotional needs in addition to his physical ones.
Keep praying! I will update again once we get the results from his MRIs and pain management team.
Thanks for your love & support.
We have been sitting on this information for a few weeks now. It has been frustrating to get no additional insight or understanding as to why Luke has to struggle the way he does. We have literally nothing more that we can do for Luke other than his weekly treatments, PT at school and constant advocating. We feel helpless at times, sure. Hopeless? Nope! Luke has periods of time (like the past 2 weeks) that he thrives and is just like any other kid. We feel like these times are gifts to restore us as a family so that no matter what else comes our way - we can navigate it.
Luke is constantly up and down. Fine one day, in the hospital the next. That is the nature of this rare disease! I think it is safe to say that we are adjusted to life with 2 kids with unique needs. A few weeks ago, Luke got a raging fever that caused his blood counts to drop. He was borderline neutropenic and totally shot. We had to take him to Maria Fareri for an evaluation, bloodwork and cultures. I packed the hospital bag in 10 minutes and spent a sleepless night in the hospital with Luke and without an ounce of anxiety. Drew and Parker kept on with their typical weekday routines and kept the house in order to boot. The Whitbecks are a good team!
The looming question is how will all of Luke's medical coverage change with the newest version of "health care reform" that is coming in the new year. The answer? We don't know. But, what we do know is that God will continue to take care of us all like He always does. There is no doubt about that.
Hi Meg. I am Cathy Cavey’s Sister. When our John was born (8/3/90) he had a multitude of issues. He had a trach, cleft palate, and severe reflux and as we discovered not until he was nearly 2 yrs old severe allergies to eggs, milk, and tree nuts. As an newborn he was as stiff as a 2x4 due to reflux. At 8 weeks Our GI dr decided it wasn’t safe to feed him ( because of a swallow dysfunction formula was coming out of his trach ) so they gave him a Gtube and in the process also did a Nissen fundoplication where they wrap the stomach around the esophagus to prevent reflux. This Nissan wrap completely stopped the reflux and he was able to relax. Amazing difference. We were told that the reflux left permanent scaring on his esophagus even though it only lasted for the first 8 weeks. I know this is a lot of info but thought it might help. John is 27 with a multitude of issues still but happy and enjoying every single day. We pray for Luke every night. God bless you and your family.
It's amazing to see how well Luke handles the weekly infusions! He knows the drill, and greets everyone. He does get alot of attention in those 5 hours, and he seems to appreciate it. The only time he gets out of sorts is when the fever and pain go beyond the reach of tylenol. Thank God that doesn't happen every week! We truly see the blessings of all the prayers offered for Luke and family. Thank you!
Hey, Luke. I know this is a troubling time for you and mommy and daddy. Hang in there. Jesus is sitting right there beside you.
Our prayers are with Luke as continues his battle. Please give him a big kiss for me.
So good to see that smile. Lots of love little warrior