The Madonia Family Needs A Miracle!

I was prompted to create this fundraiser after reading an update on a little boy's condition that I have been following for quite some time.  Andrew Madonia was diagnosed with Mitochondrial Disease a few years ago and recently enjoyed a Disney Cruise from the Make a Wish Foundation.

Andrew's mom is a McCutcheon High School graduate, and her father was a pastor in our area several years ago.  They are a wonderful Christian family whom I have known for many years.  This beautiful family has literally been through a perpetual twilight zone experience.  The story is full of trials and tribulations.  One might consider it to be a modern day biblical Job tragedy.

You can read Andrew's story below as I've pasted a portion of his story from the blog his parents created a few years ago for those who wished to keep up with his progress.

The current situation is that his brother, Nathaniel, has been sleeping for 18 hours or more each day, and his parents are perplexed by this latest development.  With all they have been through, emotionally and financially, it has become a burden that they can no longer bear alone.

Here is a portion of a message that was posted by Andrew and Nathaniel's parents today.  I would like to pledge the first $100 to help ease their financial burden.  I would also like to pledge my prayer support for the next several days.  Will you join with me in praying for a miracle for Andrew?  And if you can help financially, no gift is too small.  If you can give $10 or $20 it would help this family greatly.

Here are the current burdens and needs:

"I really don't know how to put this into words, so please forgive me in advance for being so open. We are at such a loss right now...I wish that everything that has been happening recently were just a dream. It seems so unreal and I wish it was just a bad dream. Unfortunately, it seems that it is our reality. I know that so many others are struggling with their own issues and feel bad for even bringing up what we are struggling with right now. We created Andrew's website for many reasons, including helping others that are faced with similar struggles and an outlet to help us communicate our honest feelings, thoughts, etc. Today we need to use the outlet as we are close to the breaking point. Please don't feel obligated to read any further...we just have to release this pressure somewhere. I may end up deleting this post later...who knows.

We are so thankful that Andrew has been fairly stable recently. The extra medical bills were beginning to slow down and it really seemed like the bleeding was beginning to stop. Jessica and I decided that our family needs to downsize so we can try to begin living a normal life and pay off all this accumulated debt. About a month ago, we started looking into various options to reduce our monthly expenses. We investigated moving out of state and things seemed to make sense to get Andrew out of the heat in Arizona since it makes it really difficult for him over the summer. Unfortunately, that option quickly fell apart and we felt it wasn't what God wanted us to do at this time. Next, we looked into other options here in Arizona and were running into many dead ends since the cost of living is so high. It was getting very frustrating, because we just couldn't seem to find a way to ease our situation. Thankfully, Steve and Jill had offered for us to stay with them for a few months while we try to get back on our feet and figure things out. That seemed to be a great plan but then we stumbled across an amazing deal on an apartment closer to my work. It worked out to be a great savings and lined up perfectly with when we need to move out of the house that we are renting. We felt (and still feel) that it was a God we jumped at the opportunity. Everything seemed to be falling into place, so we started working on downsizing, selling lots of things on craigslist, garage sale, etc.

The day before we left for our summer vacation we learned that my vehicle needed the timing belt and a number of other items replaced. When we got back from vacation we decided to get it fixed and sold all of our stock to pay for the repairs. We had purchased the stock and always kept it in case of an emergency, so it seemed like everything was still on track...just another bump in the road.

Then shortly after you probably learned about Nathaniel's baffling medical issues. He continues to sleep 16 hours a day and we are still trying to figure out the exact cause. It seems that we are possibly on the right path, but the timing couldn't be worse than right now. However, we can't ignore something serious like that so we continue to push on for his sake.

It just seems so unreal and honestly feels very unfair. I am trying not to have pity party or give up, but honestly it's hard not to feel that way. I think the thing that was the feather that broke the camels back was yesterday when I didn't get a very large sale that I've been expecting for 2 weeks. It was going to give us the shot in the arm that we needed. Instead of getting a break, now we are in a situation where we will owe my company. Thankfully, they will work out a repayment plan from my future commission checks, but like I said it just seems too unreal.

I so wish that I was making this stuff up or that I am going to wake up and realize it was just a dream. I don't know how much more we can handle...we both broke down yesterday. Thankfully, Justin and Kara took the boys so we could decompress a little and get back up to face today. We aren't looking for sympathy or attention or money or anything like that...just needed to vent this morning. We would appreciate your continued prayers, though, knowing that somehow God will change things for us. We know he has a plan but right now we are struggling to understand it. Thank you for letting me share our helps to be able to vent from time to time. We are very fortunate to be surrounded by so many caring people.

The Madonia's

ANDREW'S STORY from his blog:

Andrew has been on a journey since birth, and we are very blessed to be the parents of such an Amazing Boy. He is an inspiration to everyone that he meets. Andrew’s name literally means Strong. As you read about Andrew, you will surely see that he always lives up to his name.

But first, let us introduce you to Andrew. A smiling and outgoing 6 yr old with a great personality, Andrew loves stuffed animals, especially his favorite elephant Deloris. Deloris has been by his side through every test, doctor visit, hospitalization, etc. Andrew also loves to play with Quade (service dog), play soccer, Legos, dress up, watch movies, play Mario Kart on the Wii and all the fun stuff a typical 6 year old likes to do (when his condition allows him).

Andrew suffers from Mitochondrial Disease (aka “Mito). You may be wondering, “What is Mito?” The Mitochondria are the energy within your cells. Those with Mito suffer from very low energy levels, which then puts their body in a constant fight or flight mode for survival. For instance, in order for Andrew’s body to function properly, it needs to pull energy from other parts of his body. Many times this causes organ malfunction/failure, often leading to a life-threatening or deadly situation for those suffering from Mito. There are many different forms/symptoms of Mito…over 3000 in fact. Andrew’s Mito condition is tied to numerous additional diagnoses as you will read about very soon.

Andrew’s symptoms began at birth when he was unable to eat properly. It quickly progressed into major G.I. issues; severe constipation, acid reflux/GERD, etc. He then suffered from frequent illnesses; ear infections, colds, flu, pneumonia, etc. Even early on, he always seemed to be very lethargic and fatigued easily. His condition baffled doctors and specialists alike. We remember many stating that he would “simply grow out of it,” but we knew something just wasn’t right about his health.

His pediatrician, Dr. Nilam Khurana of Healing Hearts Pediatrics , was unwilling to give up on Andrew. Through her efforts and local parents of children with similar issues we were able to meet Dr. Fran Kendall of Virtual Medical Practice in Atlanta, GA. Dr. Kendall has been able to put in place the proper care for Andrew’s condition. Unfortunately, Dr. Kendall is nearly 2000 miles away from our home of Chandler, Az. His care requires yearly trips to see Dr. Kendall, numerous appointments with local specialists, and weekly anti-body infusions to delay the damaging effects of Mitochondrial Disease.

His current diagnoses include:

Mitochondrial Disease - Weakened Immune System (requires weekly Antibody Infusions) - Malaise and Fatigue - Hypotonia (Muscle Weakness) - Ligamentis Laxity (causing Hyperflexibility and Pain) - Asthma - Laryngeal Penetration – G-tube (Feeding Tube) - GERD/Acid Reflux - Severe Constipation - Femoral Antiversion (Leg Misalignment) - SMO Orthopedic Shoes (for Fallen Foot Arches) - AFO Orthotics (for Stability) – Congenital Right Facial Droop and Facial Nerve Disorder (Facial Paralysis) - Petit Mal Seizures & Metabolic Meltdowns - Delays in Fine and Gross Motor Skills, Visuospatial Memory, Adaptability, and Inattention - Sensory Integration Dysfunction (Sensory Issues) - Lack of Physiological Development - OCD - Bi-Polar - ADHD - Other Psychological Issues, such as Depression - Irregular Body Temperature - Chromosome Duplication (5q23.3) - Benign Brain Cyst - Migraines (Ice Pick Headaches)

Andrew is followed by over 15 different doctors and specialists for these issues. He is currently on 15+ medications to maintain wellness, proper energy levels, and treat the diagnoses listed above.

In addition to all this Andrew has a beautiful Service Dog. Quade is not only a great companion but a wonderful helper with his care! Quade knows 90 commands, such as: helping Andrew with getting undressed/dressed, opening doors, recognizing his “Mito meltdowns,” alerting an adult when something is not right with Andrew, and so much more!

However, no matter what Andrew’s struggle may be for the day, he is always SMILING. Many of us have been knocked down, broken, and felt our world crumbling to pieces when faced with difficult times. Andrew experiences these things everyday but does not give up…He’s a True Fighter. In fact, he amazingly started Kindergarten (mainstream) this year and can’t wait to go to school each day!

We simply ask that you will continue to keep Andrew in your prayers as we patiently wait for a Mito cure. With your help, organizations like Help Mito Kids and the many Doctors/Specialists who are becoming more familiar with Mito; Andrew has hope for beating the odds and surviving this very life limiting disease.

Please take a moment today to join Andrew’s Team of Prayer Warriors, add yourself to his Facebook page (link on the How to Help Page), and when the opportunity warrants, please spread the word about Mito within your community.

May God Bless you through Andrew’s Story.
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