Super Alon’s Road to Recovery from Hirschprung’s Disease

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Hi! I am Alon, I'm diagnosed with a rare birth defect affecting 1 out of 5,000 babies called Hirschprung's Disease (HD) and this is my miracle story.

You can browse the photos for the short and summarized version (or view it on Canva slides). For the long and detailed version, you can continue reading below.

Before I tell you about my story let me share to you the verse that we're holding on to as a family. God can turn any situation around! Just look at these photos below - 2 weeks difference!

What is Hirschprung's Disease or HD:
Also called congenital aganglionic megacolon, HD is a developmental disorder that occurs when some part or the whole of a baby's large intestinal nerve cells (ganglion cells) don't develop properly in utero (inside the womb), resulting to functional obstruction (problem passing stool/intestine gets blocked). HD is a rare birth defect that affects 1 out of 5,000 babies.

More information about HD:
https://kidshealth.org/en/parents/hirschsprung.htm...

Here's a summary timeline of what I went through since birth (because my mom loves to make timelines) ! ;)

BIRTH
So my miracle story started when I was born. Mom told me that the most painful part of her pregnancy and delivery is when they were travelling home from the hospital without me. Dad traveled from our home in Calamba to Batangas and back daily to deliver freshly pumped breastmilk, clean clothes, supplies, and even my antibiotics. Here's what happened when I was born:

After a week of stay in NICU, My doctor changed one of my antibiotics because I'm not responding well to the meds as seen in my blood work up. That same time, Mom was finally allowed in the NICU and we meet up daily for latching practice. They only allowed me to go home after finally getting a good results on my lab tests and learned how to latch properly. Our hospital bill including mom's CS delivery went up to almost half a million pesos. We used up all of our savings including emergency funds and sold our 2nd hand car. We took loans so I can finally go home. I would like to take this opportunity to thank everyone who reached out to my parents for emotional and monetary support during that time. Your prayers moved mountains!

NEWBORN to 6 MONTHS:
When I went home, I did not have problems passing poop anymore. I was gaining weight properly and was healthy and active. I started showing interest in solid food when I was about 6 months old. Mom tried to give me small amounts of boiled and mashed veggies a few weeks before I turned 7 months and I was able to pass poop daily until 2-3 days before December 3. Looking back, my parents didn't have any clue that something was wrong with me because I did not show any common symptoms of HD or being sick like bloating, swollen belly, constipation, no interest in eating, etc. In fact, I was happy, playful, eating well, and very active.

EMERGENCY
We were sleeping like the usual. It was around 2 am of December 3 when I startled mom and dad with my very loud cry. They thought I was just bitten by an insect so they took my clothes off and checked my whole body. They found nothing and tried to calm me with hugs. I went back to sleep but after a few moments I was grunting and making noises that seems to sound like I was choking. All of a sudden I'm not responding to them anymore and my eyes kept shutting close despite their efforts to wake me up and call my name.

They did not waste any second and rushed to the car immediately. We went to the nearest hospital - Calamba Doctors Hospital, around 15mins away from our house. They suctioned my mouth and they only got small amounts of milk. They gave me oxygen support and took an x-ray of my belly. It showed dilated & inflamed intestines. They also pricked my hand and took blood to test my sugar and there was a huge spike! They did not accept us for admission because they don’t have a pediatric ICU which was the ER doctor’s order after checking me and told my mom that it's possible because of my lack of response, the infection might have reached my brain already. Mom & Dad was praying the whole time trying to hide their panic and worry. They are also talking and reciting God’s promises to me.

We rushed into another hospital ER around 10 mins away - Calamba Medical Center - but they also did not accept us due to unavailability of their PICU. This time I’m shivering, my body was so cold and was turning almost color purple.

We went to another hospital around 20mins away — it was my first time to see Dad drive that fast and first time to see Mom cried to God so loud saying “in Jesus’ Name, I speak life to Alon. No weapon formed against her shall prosper. I rebuke anything that’s not from You Lord, please heal my baby” a million times.

When we arrived in Global Medical Center of Laguna in Cabuyao, they administered to me in the ER right away and did all the workups and x-rays including NGT decompressions and suppository. The first thing that came out of my NGT tube was "coffee grounds" color output and they said it means bleeding already occurred. My face and grunts showed that I was in a lot of pain but thank God the staff was all helpful and they listened to my parents'. They also helped us look for PICUs in all of Laguna and other nearby provinces/cities — calling hospitals one by one.

Around 3-4am my lolo Isagani, wowa Eden, Wowo Manuel and tito Paul arrived from Bulacan/Quezon City and helped Dad look for PICU and my medcine and helped mom to advocate and pray for me.

The hospital staff was able to reach my pedia. Miraculously, I was gaining consciousness and is already responding with cries. My vitals became a little bit stable but I was still very sick and needed to be admitted right away. Hopes were high as I was pooped a little bit already. But my belly has clearly become swollen and my blood workup is showing a lot of infection.

That morning, I was admitted and given antibiotics and other medicines through IV, the nurses were teasing me that I already put up a “Christmas tree” in advance pertaining to all the IV and tubes hooked up on me. It made my mom laugh for a second — then cried a lot after. It's gonna be my first Christmas. My Dad is born on Dec 25. This wasn’t a very ideal celebration.

The afternoon of the following day (Dec 4), without showing better signs of recovery, the doctors told us that the Pedia surgeon consultant ordered a surgery right away. My mom and Dad hugged and cried and prayed and worshiped. Suddenly found myself in an ambulance to Quezon City. We reached the National Children’s Hospital ER around 2 in the morning of December 5. It was a busy night - blood extractions, x-rays, several doctors and nurses checking in and everything in between.

Around 8 in the morning, one of my surgeons did a procedure called Penrose Drain to get rid of excess gas trapped in my belly. This made my mom cry so much. Dad wasn’t allowed in but he’s the one running errands for us and calling every chance he get. We were admitted to the surgical ward around 1 in the afternoon.

SURGERY & RECOVERY
Around 3pm I was given the OR gown and mom was asked to sign a lot of consent papers. Mom heard the surgeon say to the nurses “unahin na natin ‘yung isa kasi ‘yun puputok pa lang (pertaining to another emergency case) ito (points to me) pumutok na". It was a triage/protocol. After a few seconds they returned and told mom that I’m up for surgery.

The operation took almost 5 hours. The most grueling 5 hours of my parents’ life. They prayed and worshiped the whole time. Halfway in the operation the surgeon called Mom in the OR and asked questions about my bowel movement since birth. She was told that they found a hole (perforation) and parts that shrunk and that they will cut that segment out and resection the parts that were "OK". The segment that they will take out will be sent to the laboratory for biopsy to properly diagnose me. This broke momma's heart into pieces. After another 3 hours, she was called again to confirm that the operation was done and that miraculously, I tolerated it well. Before the surgery they told mom that my body is very weak and the operation is too high risk and that the ICU is prepared for me already and that they will do intubation just in case. And you know what???? I DID NOT NEED ANY OF THAT! My GOD is a BIG GOD!

After 2 hours Mom was told to get me from the OR's recovery room. I was very groggy and in a lot of pain. Recovery was a struggle because of blood transfusions, fluctuating body temperature (maybe because I have very bad teething pains!), and the adjustment to the colostomy bag. After 48 hours I was able to pass gas and my colostomy bag has a little output so I was allowed to drink a few amounts of water - and then after a day, I was allowed to drink milk and I cried while I was latching for the first time after a very long time of no milk - mom was crying too!! I endured more than a week of dextrose-only-diet! Mom played with me and read stories to me while Dad and my relatives are on video chat with us daily! Those activities made me sleep better at night. On my 7th day of recovery, I was allowed to go home and I was able to give a very cute smile when I saw my Dad!

The bill from Global Medical Center of Laguna was around Php 100,000.00 including the ambulance ride and RT-PCR. The bill from National Children's Hospital was around P70,000.00 but miraculously, all of it were covered by the government -- Philhealth and Malasakit center! This was a sigh of relief as things are happening so fast and my parents didn't have time to worry too much about the bills payment nor run errands to get help financially. Again, WE HAVE A BIG GOD.

It was a big adjustment for our family dealing with my small body with a poop bag (colostomy bag) attached to my belly. Changing every 5 days (or when it leaks) was a very difficult at first - rashes were a whole new level of different compared to bum rashes. I cry a whole lot every time we had to deal with it. But because my parents were great soldiers (hiding their tears and frustrations!) while doing everything to take good care of me, I am a good trooper too! Eventually we became "calmer" while dealing with it, it never gets easy but we praise God for wisdom and patience and strength that we have as a family.

It was the happiest year of our lives as we ended 2022 ALIVE AND COMPLETE. To God be all the glory!

DIAGNOSIS | 2nd SURGERY
My medical team in NCH was trying to rule out 3 possible diseases: enterocolitis, intestinal TB, and Hirschprung's Disease (HD). The segment that was taken out of me during my emergency surgery went to 2 different laboratories (NCH and National Kidney's) but both did not confirm nor rule out HD.

After going through continuous follow up check-ups (surgical, general, gastrointestinal) my parents were told that my colostomy would NOT be taken down without proper diagnosis to make sure that my bowel movement will be treated as needed. By February 2023 we went through series of labs and tests and diagnostics that not only made me wailed with every procedure (I already have trauma whenever medical staff will surround me or whenever I'm being laid on hospital/clinic beds!) but also made me sick from stress and tired body because we're from Laguna and we travel to Quezon City for every follow-up check ups and diagnostics (NCH). Not to mention all the expenses on gas, toll, food, supplies whenever we travel. Thank God for my Wowas and Wowos in QC who are always available to assist us whenever we're there!

My parents always ask God for wisdom and favor throughout our journey - they thought to look for the head surgeon consultant (Dr Russel Alegarbes) and found out that he can see us in Biñan (Unihealth Southwoods) or in Calamba (CMC) through his private practice. Around the month of March, after a few attempts to get an appointment, we finally met him and he read all of my diagnostic results. He already gave an admitting order for rectal biopsy, colostomy closure, and possible pull-through procedure. We travelled to QC and went to NCH again to finally get clearance for surgery. However, getting scheduled in NCH is now difficult because we're not an emergency case anymore. Their available slots are still 2-3 months from now and the surgical fellows there told us that I still have to undergo 2 more operations. So my parents opted to get admitted to CMC or Unihealth instead so we can get answers and treatment already. We went to the two hospitals to get an estimate and check for possible medical card coverage and pray for the right hospital to choose. We decided to do it in CMC because it's nearer our house.

The weeks nearing my 2nd operation was challenging for my parents - besides not being financially ready for the costs because we're still paying our debts (the estimate for this surgery was Php 150-Php 250K depending on the procedures done in the OR and the duration of admission/recovery), the emotions were high, the trauma that the emergency surgery has caused them were still not processed properly and though emotional healing is desired, it's still very painful for my parents to see me suffering. I'm growing so fast and time is definitely a thief, BUT time with a medical condition is a different story. It's like everything is happening so fast but also so slow but also so heartbreaking but also exciting - definitely mix of emotions! Of course, there were high hopes that nothing is wrong with me and that I'd be able to live a normal healthy life after the "colostomy closure", all they can do is cry out to God to be in control of everything. When we got clearance from my pedia and the negative result of my RT-PCR, I was admitted and got prepped for surgery. I barely slept because of all the crying I did after blood extractions, IV insertions, and of course, not allowing me to latch on my mom.

I was called to the OR at 9am, then the operation started at 10pm. Around 2pm, mom was already palpitating due to extreme anxiety. When she was called to the OR midway the operation, my surgeon confirmed the bad news. I got negative results for ganglion cells from the rectal biopsy - twice! Mom was devastated and all she can do was cry to Dad while telling him the news. Though mom was very heartbroken, it was a refreshing experience for her because Dad was with her the whole time! Unlike the first time when she was alone as a watcher-imagine the emotional weight of dealing with all of it without Dad. Dad was a trooper and run all the errands for me and mom including buying colostomy bags while I'm in the OR - we didn't have extra anymore because my parents thought I wouldn't need it but we still did :'( !

Around 7pm, Mom was called again to the OR and this time I'm in the recovery room - so weak, so asleep, so groggy, but also crying in so much pain at the same time. I did not wake up for the next hour and had high fever! Mom talked to me, comforted me, and gave me sponge baths to help my fever go away so I can return to our room to continue my recovery. She was also crying because my surgeon talked to her about the details of the surgery. I now have an ileostomy - an opening in my belly (with a poop bag) connected to the last part of my small intestine. I have it for 3 months while I prepare for my last! surgery which is the ileostomy closure. Sabi ni Mommy, bingo na ako as a stoma warrior - colostomy and ileostomy!

After 48 hours post surgery, I already farted and pooped then I was allowed to drink milk again and was monitored for more poop and farts! Recovery was hard because at 3rd day, my IV went out and hospital staff couldn't find any veins for IV insertion any more so they allowed me to continue my antibiotics orally at home.... I was sent home by the 5th day. I'm that strong because my God is strong! As mom and Dad sings to me their made up song "sinong magaling magpagaling? Si Alon magaling magpagaling! Dahil magaling ang kaniyang Tagapag-pagaling!"

Our bill was indeed around Php250,000.00 - miraculously some of it were still covered by the medical card even though the diagnosis is congenital and should not be covered anymore. We still took big loans again from friends and family and is not in deeper debt but we are feeling blessed than ever.


Here's what my mom told my prayer warriors' GC for the update when we got home:

Here "hole" now is a total of 3 holes/surgical scars:

1.) her previous stoma for colostomy: closed with a wound/stitch and a medical plaster needs cleaning and changing every time the bag (current poop bag-ileostomy) is changed so that's every 3-4 days with antibacterial ointment

2.) New stoma for ileostomy bag: her new poop bag is now attached on the other side of her stomach, so while her anus/rectum is healing (from the pullthrough procedure), she will poop via the ileostomy bag - it's connected to the end of the small intestine so the output is always watery, more prone to rashes around because the output is liquidy, when it sticks to the skin it's like acid eating the skin. There are medicines and ointments prescribed when it happens.

The poop bag is P200+ each - changing is every 3-4 days or every time there's a leak already.

3.) Rectum/Anus: there is a stitch/wound that bleeds in the diapers like light menstrual flow, but it decreases daily though it can still bleed up to 2-3 months, and there is also still discharge from the intestine. The working and remaining colon has been attached to the anus so after 3 months, once the ileostomy closure is done, she will be able to poop normally.

7 hrs in the operating room for a small baby, it's no joke. I feel like Alon feels like her body is bruised now + she has a lot of IV insertion holes too!

HD can only be cured with surgery (series of surgeries to some). But it entails a lifetime of rehabilitation and change of diet and lifestyle. So now we need to understand that Alon has her own diet. Let's not force foods to her that she can't eat. We will find out about her diet and nutrition in the series of follow up check ups. It is to avoid constipation which is the enemy of children with hirschprung's because the goal to continue the road to recovery is proper bowel movement and pooping will only be "OK" if you eat the right foods. :)

While waiting for her next operation, her anus is for rehab: the hole will be "exercised" and "maintained" since there is a wound, it might close once it heals. There's a tool called hegar dilator (P2,500/set) to be used to trigger her butt hole to contract and this will be used daily. Her appointment with the surgeon is every 2 weeks from now on until she is operated on again.

Her next and hopefully finally operation is JUST FOR ILIESTOMY CLOSURE. In June/July. Since the disease is considered "congenital" the medical card will not cover the bill. Because this disease is so rare, there is not much support here in the Philippines, some pedia will dismiss the symptoms because they don't know about this disease. We are very blessed that the Lord put us on the right path, in the right hands. Alon is very blessed. You can join the support group I saw on Facebook. Ever since I joined there, I appreciate what happened to Alon - there are so many people who go through the whole Hirschprung's journey without any clue and is just going through circles because of the lack of knowledge of some hospitals and doctors about this disease. Every day I thank the Lord because even though we are not rich, we are able to finance the medical bills and maintain Alon's needs even though the funds often come from loans. We are rich with wisdom, love, and God's favor and healing and that is more important to me than money.




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  • Guest
  • Donated on Dec 03, 2023
  • God provides and God heals ❤️

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  • Anonymous
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  • Anonymous
  • Donated on May 07, 2023
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Nov 30

Closure Operation: God’s delay = God’s protection

Update posted by Jeah Austria at 07:52 am
rrrr

We weren’t able to update you all about Alon’s journey since we made this campaign live and here’s why: First of all, we are sincerely grateful for everyone— friends, family, even strangers who donated and are still rallying with us through prayers. Being ’medical’ parentd who switched our day to. . . . .

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18 donors
  • Guest
  • Donated on Dec 03, 2023
  • God provides and God heals ❤️

₱1300.00
  • Anonymous
  • Donated on Jun 01, 2023
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  • Anonymous
  • Donated on May 07, 2023
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