A Bone Marrow Miracle for Arlo

Hi, my name is Brianna. I am raising funds for my sister’s family. My darling 5-year-old nephew, Arlington, sweet, little “Arlo”, needs a life changing, but risky bone marrow transplant to cure the severe bleeding disorder he was born with. His loving mama; Shani, is my sister. His father is David, beloved “Doodah”, to Arlo. They are preparing for the most challenging & perilous endeavor of their lives.

Arlo suffers from a ultra rare & severe bleeding disorder called Glanzmann's Thrombasthenia (GT). This shocking diagnosis can be elusive, as only ONE in a million people have GT. It is often the last thing hematologist's test for due to its rarity. There is zero history of bleeding disorders on either side of his family. Arlo’s diagnosis came following a near catastrophic bleed when he was a tiny two-week-old baby. The doctors in the emergency room said a newborns body contains about 8 ounces of blood. He had lost 7! Another minute and he would have been gone. We were terrified to learn that blood loss that extreme can cause organ and brain damage. Because he was so young, the doctors said, “We need to wait and see.”

It is a miracle and a blessing that Arlo is healthy and has proven to be smart as a whip. We all feel infinite gratitude to Seattle Children’s Hospital (SCH) for their excellent care over the last 5+ years.

Arlo and his team have already begun preparations for his bone marrow transplant (BMT). I have put together this GoFundMe to raise funds to help them during this brave moment. I consider this to be one of the most important things I will do in my lifetime.

Baby's first day earthside. A magical day. I was honored to be there.

Arlo is an absolute joy. Hilarious and silly, rambunctious, curious, gentle, thoughtful and pensive; he is incredibly loving, sweet and wise beyond his years. And, he has spent a lot of time in hospitals fighting for his life.

A small injury can be shockingly dangerous. A simple nosebleed can be life threatening and result in a days-long hospital stay. A little fall or bonk can cause extreme hematoma requiring immediate medical intervention. He once fell backwards off of a chair. He landed on the base of his spine, putting the family on paralysis watch for a week in the ICU. Arlo has been hospitalized many times over the years for all kinds of bleeds. Miraculously, so far, the majority of his injuries have eventually healed well.

There is also the constant risk of joint and muscle bleeds, which can be immediately dangerous because they are often “invisible”. These kinds of bleeds can be caused by overuse, a fall, hyperextension at a joint, or something as simple as jumping on a bed. These have the potential to cause mobility issues over time. Joint bleeds can cause irreversible damage. Arlo often wakes in the night crying because his legs or feet ache.

Arlo is pretty aware, and informed, about his condition, his limitations, and the necessary measures he faces. Generally, though, he’s remarkably upbeat. Almost always, when asked how he’s doing, he replies, “Great!” The courage this lovable little human continues to demonstrate is just unbelievable, and soooo inspiring!

There are no preventative medicines for GT, only costly meds that help stop a bleed. These all have challenging side effects & lay him low. Worryingly, there have often been supply chain issues with one of his key meds. Another medication must be administered by IV in the hospital and is exorbitantly expensive. The hospital has often had an issue with low supply due to this high cost. None of these drugs are 100% effective and must be given every couple of hours for days, sometimes weeks on end.

This kid loves his “parkour!" He is constantly covered in bruises and petechiae (tiny purple spots from broken blood vessels.) Understandably, he hates being told to be careful. For all of the above reasons, they are tethered to Children’s Hospital and rarely venture more than an hour’s drive away. My family and I live an hour and a half away. I pray we will see Arlo more often when he is finally recovered and cured of GT. Arlo is hopeful his mama will finally let him play in a bouncy house!

My dear sister…when I spend time with him, I feel so worried, on-edge and stressed, just watching him play and explore - Shani must live with her heart in her throat! :-(

This medical journey will be high risk, arduous, & tremendously expensive. His hematologists at Seattle Children’s and national experts Shani has consulted have all agreed a BMT is the best option for Arlo to have a full and normal life.

This begins with several weeks of outpatient tests, scans, etc. during near daily hospital visits. Arlo will be admitted September 18. That day, they will begin with surgery to install a PICC line - this line will be inserted in his arm and threaded through to a larger vein above his heart. This is made more dangerous, since, at this point, he will still have GT and excessive bleeding is a very real concern.

Once that is complete, they will begin with “conditioning”. Essentially, the PICC line will deliver intense chemotherapy to destroy all of his own healthy bone marrow, and decimate his immune system. This will prepare his body to accept the transplant. He is likely to be very sick. The doctor says that they will be bringing him as close to death as possible without actually killing him. Ironically, the transplant itself is actually simple and “easy”, one IV bag. Much of the risky, painful, exhausting, & heart-wrenching stuff is before & after.

The family has been told that they should expect to be in the hospital for 6-8 weeks or more, as they closely monitor Arlo to ensure the graft has taken. He will be isolating for an entire year at home as his immune system is rebuilt.

The bone marrow that Arlo will receive will be donated by a living and unrelated volunteer. We are deeply and endlessly grateful to this hero and all those who volunteer to be bone marrow donors! The process they willingly go through is more complicated than a simple IV bag!

We are raising funds for:

Home repairs and deep cleaning: There have been humidifiers running 24/7 for 5+ years because it helps avoid the nosebleeds. They also live in the Pacific Northwest; moisture in the air and ground is a common and a constant concern in this area. Unfortunately, (and unsurprisingly), black mold was found throughout their home. The bone marrow transplant team will not proceed unless they know that it will be mitigated. Arlo cannot return home until then. This means several new windows, renovations in the kitchen and basement, mold remediation throughout the house, cleaning the HVAC, painting, deep cleaning and sanitizing, etc. We have been warned it is likely we will find more moisture and mold as we go.

We need to purchase and install a high quality air filtration system for the HVAC. They will also need to discard and replace numerous belongings. We were surprised to learn about the little things that need to change. They will need to remove all their houseplants!

All of these measures aim to create and maintain a healthy and safe place for Arlo and his initially non-existent immune system, to isolate, recover, and grow. Without these steps taken, the risks to Arlo are just too great.

Food, gas and other essentials: Mama & Doodah will be “admitted” to the hospital with Arlo & will be isolated during their stay. Most meals will be purchased at the hospital cafeteria or nearby restaurants. Until then, they will be driving from Renton to SCH multiple times a week for hours a day and then frequently for a year. I am sure there are many things in this category, and others that will pop up as time passes.

Lost wages: Their medical team has advised that David take leave as soon as Arlo is admitted and begins treatment. There is no way to know how long he will need to be away from work. Until Arlo’s immune system is strong enough, it is far too risky for David to be exposed to germs and viruses that he could then bring home.

Frustratingly, this is all variable, depending upon countless, ever-shifting factors.

Most of us are aware that chemotherapy is quite hard on a body. Transplants themselves, (of any kind) are very complicated. Both will have lasting effects and potential complications. Any additional funds will go towards supporting Arlo as he grows and will help them to handle any issues that may arise.

We want so much for Arlo to have all the opportunities in the world. This little boy has had too many limitations and difficulties in his life so far. He will be monitored and on anti rejection meds for the rest of his life.

We are a family that believes in the power of love, prayer, and healing juju!! It will be such a blessing to know that there is a wide circle of love and support surrounding this little family. Arlo, Shani & David graciously accept and deeply appreciate all the loving energy sent their way.

Thank you for reading our story and considering our challenges in supporting this little boy. My great hope is that we can help to ease this huge financial burden to some extent so that they can just focus on giving their son the best possible care.

Please give if you can, pray if you will, and share our GFM to your social networks. We will be eternally grateful for any and all support our family, friends and community can provide.