Bone Marrow Failure, Multiple Fires & Awful 2023

Hello & Welcome. Thank you for being here!! My name is Gloria, I am Auntie to Miranda, age 25. She is mommy of my 2 baby Grandnieces, Baby Remi, age 1 & little Nova, age 4. Their dad is Marco, age 29. Please bear with me as I take you through their 2023.

This is a young family just starting out. They were settled living in Aurora, Co at the Club Valencia Condo Complex that caught fire, not 1 time, but 2 times in 3 months! The most recent fire being February 1st 2023, with no insurance to help. This made the news: https://www.denver7.com/follow-up/insurance-denies-club-valencias-claims-for-fires-that-displaced-half-the-property-causing-delayed-repairs

They didn’t have much to start with & had already spent a lot to replace what was already damaged in the 1st fire. Now they have to replace belongings from a 2nd fire and suddenly have to find a new place to live, with a cat, a dog and 2 babies )-: They faced this hardship & managed a down payment to move to another apartment in Northglenn, Co in March 2023.

7 months later, October 2023, they are starting to settle into their new little life at this new little place. Looking forward to new adventures such as 4 yr old Nova starting pre-school & baby Remi’s 1st Halloween.

Suddenly, the week of October 26th, Nova starts coming home from pre-school covered in multiple, huge, awful bruises all over her little body! They took Nova to the Emergency Room at Children's Hospital. Upon the doctors examinations, they advised this bruising was not due to abuse or accidental falling, this was something medical. They started blood tests & other labs, sent them home to wait for results after the weekend.

A few days later as they await results, on the Oct 31st,5:30 am on Halloween, Marco has just left for work. Miranda is alone with both babies when Nova’s nose starts to bleed badly. Miranda tried for the next 15-20 minutes to stop this nosebleed. Nothing worked, Nova started to get pale & continued losing blood. Miranda called 911 & Nova was transported by ambulance to Children's hospital again. They have 1 car only so Miranda calls Marco back from his commute to work, he rushes back, and they go to Childrens.

At the hospital, they are told Nova’s blood counts are very low, they are running a lot of blood test and scans to see what could be causing this scary issue. After a few long, agonizing days of poking, prodding, tests & exams, including a Bone Marrow Aspiration & Bone Marrow Biopsy, they finally learn that Nova has a very rare blood disorder called "Severe Aplastic Anemia”.

Severe Aplastic Anemia is an Extremely Rare but Extremely Serious Life-Threatening disease that makes it so your Bone Marrow doesn’t create enough Red & White Blood Cells or Platelets. Having fewer Red blood cells causes hemoglobin to drop, which is the part of blood that carries Oxygen through your body. Having fewer White blood cells makes you more likely to get an Infection. Having fewer platelets makes the blood too thin so your blood cannot Clot the way it should when it needs to Stop Bleeding.

Getting this Diagnosis, their Lives completely are now completely upended & changed. Poor little Nova immediately had to stop going to the pre-school she just excitedly started. She cannot risk getting injured or being around crowds or kids that could give her a cold or any infection as the danger is too high.

Doctors told them that this is not only more complicated than having cancer since it is so rare & only about 2 out of every 1 million people in the United States are diagnosed with Severe Aplastic Anemia each year.

Treatment options are limited, with a major Bone Marrow Transplant as the only cure, but only if there’s a good match. If you would like to join the bone marrow registry to help: visit https://bethematch.org/

In a desperate search for a Bone Marrow Match, they also made the news: https://kdvr.com/news/local/child-needs-bone-marrow-transplant-rare-blood-aplastic-anemia/#:~:text=Northglenn%204%2Dyear%2Dold%20needs,transplant%20for%20rare%20blood%20disease&text=AURORA%2C%20Colo.,with%20a%20rare%20blood%20disorder

Since Nova does not have a bone marrow match yet, the new normal to seek treatment means traveling about an hour just 1 way from Northglenn to Aurora for blood draws to get labs, blood transfusions & platelet transfusions regularly 2 to 4 times a week just to get Nova to make it from one week to the next. This is when Nova started on a PICC Line, which is a direct line into your veins that you can keep in your arm for longer periods of time and that can be used for drawing blood and or giving medication.

Unfortunately, her little body was eating up these red blood cells & platelets faster than they could be replenished so the medical team needed to move to the next step asap. Therapy with horse antithymocyte globulin (h-ATG) plus cyclosporine (CsA) is the standard immunosuppressive therapy regimen in severe aplastic anemia. Miranda & Marco were advised this treatments is not going to be easy or gentle. The steps & risks they have to take in order to try to save little Nova’s life are going to be something brutal to go through.

But they could not even start the (h-ATG) plus (CsA) because as the weeks have passed since this diagnosis, Nova caught a virus infection called "Rosieola" which to most normal healthy kids this virus would cause a slight fever and mild rash. Unfortunately for Nova, her body couldn't fight it off, she had a fever of 103, she was throwing up, not eating, delusional from her fever, etc. They stayed up at Children's for 1 full week for her to get better.

They were released only to return 2 days later on 12/2/23 as Nova was bleeding from inside her little mouth as well as had another nosebleed. After a few visits back & forth over the course of the next weeks, the medical team decided they needed to keep Nova as an Inpatient from then on. She had to be Isolated from everyone except the parents & grandparents. This began her longest hospital stay of 14 days.

During her stay at the hospital, Nova caught a Staph Infection in her Picc line and a C-Diff infection as well. This postponed the very much needed (h-ATG) plus (CsA). Nova started to get really depressed & not eat, she also developed little blisters in her mouth that would mke it painful to eat so had to be put on a feeding tube )-:

Finally, after a very rough & painful few weeks, Nova was able to clear her infections, the feeding tube was nourishing her, she started to perk up a bit & she was able to start the (h-ATG) plus (CsA). So far, I am overjoyed with gratitude that she has not had any complications. She was released home just in time for Christmas! It has been 4 days and counting since she came home.

While she faces a long road of multiple appointments, plus the IV lines, PICC line, feeding tubes and multiple medications, machines and DME she has to have, being at your grandparents home in a little space with your family beats being in the ICU any day!

And while this is not a cure, (h-ATG) plus (CsA) has shown to work miracles & send people into remission. That is the hope we have here for Nova!!! We won't know for at least 3-6 months if this is working. In the meantime, she still needs multiple visits a week to her medical team for multiple things, including labs, transfusions & platelets.

In the midst of these health emergencies and managing Novas extremely delicate condition, Novas mommy/Miranda, also got sick. The only people allowed besides the parents were Novas grandparents, so they had to stay with Nova at the hospital while Mom/Miranda healed.

As if this was not enough for the year, their ONLY transportation, a 1996 Jeep Grand Cherokee, completely blew the transmission and left them stranded as they were coming back from one of these many back & forth 2 hour round trips & hospital stays.

Nova has been in & out of the hospital and ER for over 2 months, all through the holidays since Halloween. Dealing with this hardship has been hard to stay organized and maintain a balanced schedule or even maintain a home. They have now lost their apartment as Marco is on Unpaid FMLA Leave, they are always at the hospital and not home. They had to let their little place go and have had to move in to a small shared basement space at the grandparents house.

This fundraiser is to help buy them a car, not a fancy vehicle but a good Dependable, clean & Safe vehicle that does not need a lot of work or repairs that they cannot afford and that won’t leave them stranded on the way to a serious medical treatment for Nova. This fundraiser is also to help support rides from Ubers/Lyfts or gas to friends & family until we get them a car! They need to drive a 2 hour back & forth commute from Northglenn to Children’s Hospital in Aurora for treatment multiple times a week . This fundraiser is also for food, prescription co-pays, medical deductibles and diapers & daycare for baby Remi.

I am grateful for you taking the time to read Nova’s story. I am also saddened to my core that this little family is going through all of these major struggles & hardships in such a small amount of time. I cannot even imagine all of this in less than a year, can you? It’s like the hits keep on coming fast & furious for them, but they are all fighting for Nova’s life together and we are fighting with her with Faith, Hope & the Power of Good Prayer, Good Vibes & Positive Energy of many wonderful people who will read this and come to our aid and help!

If you would like to join the bone marrow registry to help save a life and help families like ours, visit https://bethematch.org/

I thank you in advance for Your Support. Your good deeds and generosity will be rewarded. May 2024 be the Most Blessed year yet for you & yours, and also this special little family, because of you!! Thank you.