Hi, this is Akasha’s mother, Sarah Churchill. I am so grateful for you being here to learn about my son's story and how you can help our sweet boy heal from Crohn’s disease as our family continues navigating this extremely challenging situation. It’s difficult for me to ask for money in this way, but the urgency of my son's situation requires it. Thank you for taking the time to read this.

As an infant, Akasha had some common symptoms of GI distress and eczema, but nothing alarming, and after some dietary modifications most of his symptoms went away.

In May of 2021 when Akasha turned 3, he went through some big life changes all around the same time. He had a new father figure in his life. I was pregnant and slowly losing my ability to pick him up like I used to. We went through an extremely stressful move that led right up to the birth of Akasha’s baby sister in early July, so for the first time he had to share me with a sibling. Shortly after his sister was born Akasha started school, and right before that we were attempting to potty train him.

Exactly a week after Akasha’s potty training began, we noticed a small amount of blood in his stool. This continued on and off for several weeks, but was relatively inconsistent. Some days there was blood, and other days there was none. After about a month the amount of blood increased and was joined by frequent loose stools and growing abdominal pain. After multiple urgent care visits, tests and naturopathic doctors who couldn’t provide any clarity about his condition, we ended up bringing him to the ER at Rady Children’s Hospital.

Once we were checked in, Akasha was quickly admitted to inpatient care due to low hemoglobin levels from so much blood loss, and he ended up being in the hospital for the next 32 days. This experience changed our family forever.

Words cannot express how traumatic and terrifying it was to watch my sweet little 3 ½ year old boy suffer so much. Writhing in agonizing pain throughout every day and night while losing so much blood. Screaming in fear every time the nurses came into his room because he knew he was getting poked with another needle or going through another extremely painful procedure.

We had to put Akasha on complete bowel rest as even small sips of water were causing severe pain and blood loss. He had no oral food or drinks whatsoever for 4 weeks, so all of his nutrition was received from a surgically installed IV, aka PIC line.

After MANY tests and failed attempts to stop his bleeding, we eventually had a GI scope done that showed his lower bowel completely raw, just one big open wound. This led to a diagnosis of Severe Very Early Onset Crohn’s disease, a type of Irritable Bowel Disease.

In an attempt to stop the bleeding, the doctors tried various types of steroids, complete bowel rest (no eating or drinking anything for weeks) and several other things. Nothing worked and Akasha continued losing so much blood that he needed 4 blood transfusions. He was literally pooping nothing but blood during our time in the hospital.

Finally, with no other options, we decided to give him an immunosuppressant called Remicade. Miraculously, his bleeding stopped the very next day and after 4 ½ weeks in the hospital, our brave boy was able to go home, the day before thanksgiving.

During our stay at the hospital, our daughter (who was only 4 months old at the time) wasn’t allowed in his room due to COVID restrictions, so in order to breastfeed her throughout the day I had to run through the hospital and nurse her while she was with her father, and then run back to Akasha’s room. Every time I left he was screaming for me not to leave him.

I also had to stay in a hotel for 31 nights so I could be at the hospital early enough to meet with the team of doctors and advocate for Akasha’s best interests, while also being able to co-sleep with my daughter who was breastfeeding throughout the night. Akasha’s stepfather and biological father alternated spending the night with him in his hospital room so he was never alone.

This medical emergency ended up costing me around $20,000 between 31 nights at a hotel, ordering food via door dash most days (although we had many angels bring us food), various natural supplements, and an Crohn’s specialist to help us navigate the experience and advocate for Akasha.

Since the first hospitalization in November 2021, Akasha was hospitalized a second time for 17 days in August 2022 after being fed trigger foods by a family member that sent him into a flare.

Between the two hospitalizations and tens of thousands of dollars paid out of pocket, I’ve completely drained my savings account and have been living month to month for quite some time, struggling to buy the essential things my family needs.

So here’s where things became a bit more complicated….

The medication Akasha has been taking saved his life, and for that I am eternally grateful. However, this medication has serious side effects and it’s only a bandaid to suppress the symptoms. Possible side effects include leukemia and other cancers, joint pain and arthritis, infertility, increased infection/sepsis, permanent damage to the functioning of his immune system, and more.

My plan from the start was to use this medication to stabilize him while I researched and came up with a plan to address the root cause so we could take him off of meds and truly heal him instead of just suppressing symptoms.

In addition, whenever you try to prevent the body from what it naturally wants to do, eventually there will be push back. As such, Akasha’s body has started producing antibodies to the medication, which has made it less effective. Now the doctors want to put him on chemotherapy medication alongside a different immunosuppressant drug that has reports of even more side effects in addition to the ones I already shared.

Due to the loss in effectiveness of the medication, Akasha’s symptoms have started returning sooner after he receives treatment, and it breaks my heart to say that we’re now seeing blood on and off in his stool just 2 weeks after his last infusion. Previously we didn’t see any blood until almost 6 weeks after his treatments.

This means we are at an urgent timeline choice once again, and in order to prevent Akasha from entering a full blown flare and ending up in the hospital for a 3rd time, we either need to try the new medications the doctors are recommending, which can have serious negative consequences on my son’s health, especially since he’s an undeveloped 4 year old boy, OR we perform the proper testing needed to officially diagnose the root cause of his condition, and begin treating him naturally in a way that will truly liberate him from this dis-ease. (Currently, he can only eat a handful of foods even while on medication as his body is still in such a volatile inflammatory state.)

After almost 2 years and countless hours of research and speaking with professionals, I believe that an underlying infection, such as Lyme disease, is at the root cause of Akashas autoimmune reaction. In order to determine what type of infection he has, he will need proper testing that is very costly. Once the testing reveals a proper diagnosis, he will need the guidance of a professional who understands how to treat pathogenic infections in young children, in addition to knowing how to pace and dose the treatment in a way that won’t trigger him into another flare.

As a mother I would never forgive myself if my son got cancer or lost his ability to have children because of a medication he received as a toddler that wasn’t even addressing the root cause of his illness, so I humbly ask for your support in helping us diagnose & heal Akasha while also helping our family get by as we continue navigating so much hardship and uncertainty.

Due to Akasha's medical condition and our family’s lack of child care support (or money to pay for it), I haven’t been able to work or generate any income as I am with my kids full time. So in addition to helping us heal Akasha, your donations will help ensure I can continue paying for the bare essentials like food, water, utilities and rent, as being evicted would be catastrophic for our family right now. (We’ve been dangerously close to that once already)

All contributions are welcome no matter how big or small, and if you’re unable to contribute money at this time, we are also extremely grateful for your willingness to share this with anyone you know.

Thank you again for taking the time to read our story and help Akasha and our family during such a challenging time.