Our Story

Welcome to our story and Jacob’s journey.

Jacob was born at 36 weeks.  At birth he was diagnosed with ESRD (End Stage Renal Disease) and BPD (Bilateral Bronchopulmonary Dysplasia).  He was immediately flown to the nearest children’s hospital where he was given less than a 5% chance of survival.  Jacob had a long list of other diagnoses and complications in the months that followed, but he beat the odds with lots of prayers and an amazing team at Arkansas Children’s Hospital.  Jacob stayed intubated and sedated for several months in the NICU.  He finally improved enough to start hemodialysis and was released from the hospital in August, 2018.  We were sent home with a MIC-Key button and a peritoneal dialysis catheter in hopes of starting dialysis at home shortly thereafter.

In October of 2018, we began PD (peritoneal dialysis) at home.  We do this seven days a week for ten hours each day.  So far, Jacob is doing great with this treatment.  We are monitored very closely through our Nephrology team.

Jacob is now 18 months old.  He weighs a little over 9 kilos and is approximately 76 centimeters tall.  We are working very hard to meet the requirements of weight and height so that he can be evaluated and hopefully placed on the kidney transplant list.  At that time, I and at least one other person plan to be tested to see if we can possibly be a living donor match.

Jacob is a tough little guy who is battling a hard disease.  He endures multiple daily medications, shots, dialysis, and therapies.  He has lab work at least every other week on average.  He is monitored very closely by his surgeon and our nephrology team as well as specialists in neurology, cardiology, ENT, ophthalmology and genetics.  They have all done a great job and helped to get us this far!

We appreciate all of you who have taken the time to read this, pray for our family and help in any way possible — like donating to COTA in his honor.  Please continue to pray that Jacob stays as healthy as possible.  Please pray also that he is able to meet the requirements to become eligible to be placed on the transplant list soon. 

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.

26 thoughts on “Our Story”

  1. Praying for you and your precious baby and family. I pray that Jacob is eligible for a kidney and receives one quickly. I have been on the kidney transplant list for a little over 3 yrs now and I also do PD dialysis at home 7 days a week so I can relate to your story. However I can not even begin to imagine your struggle. I would like to offer my support to you and your family. If there is ever anything I can do please let me know. Even if you just need someone to talk to. You and your family are in my prayers.

  2. Praying for you and your precious baby and family. I pray that Jacob is eligible for a kidney and receives one quickly. I have been on the kidney transplant list for a little over 3 yrs now and I also do PD dialysis at home 7 days a week so I can relate to your story. However I can not even begin to imagine your struggle. I would like to offer my support to you and your family. If there is ever anything I can do please let me know. Even if you just need someone to talk to. You and your family are in my prayers.

  3. I do not know a whole lot about kidneys. How do you know if you are a match? Does it go by blood type?

  4. I do not know Jacob or your family personally, but read his story on THV and it touched my heart. I am praying with you as you trust God for these specific requests. Let me know how I can find out if I may be a match. God bless.

  5. How do I find out if I’m a match? Am I too old? 47 this month- but I’m extremely healthy. I eat right and exercise.

  6. Your story has touched my heart more than most could ever imagine. We lost our grandson, at about 20 hours old, due to ARPKD. We never knew about this disease or that both my son and dil were carriers, until after Samuel was born and passed.My heart breaks for your son and your family. We will be in prayer for him and you as you travel through this.
    God Bless ~ Misty

  9. I do not know a whole lot about kidneys. How do you know if you are a match? Does it go by blood type?

  10. I do not know Jacob or your family personally, but read his story on THV and it touched my heart. I am praying with you as you trust God for these specific requests. Let me know how I can find out if I may be a match. God bless.

  11. How do I find out if I’m a match? Am I too old? 47 this month- but I’m extremely healthy. I eat right and exercise.

  12. Your story has touched my heart more than most could ever imagine. We lost our grandson, at about 20 hours old, due to ARPKD. We never knew about this disease or that both my son and dil were carriers, until after Samuel was born and passed.My heart breaks for your son and your family. We will be in prayer for him and you as you travel through this.
    God Bless ~ Misty

  16. How do I see if I’m a match. My sweet baby is about same age and I cant begin to imagine what y’all go through. I’ll gladly give him 1 of mine.

  19. Thank you all for your comments and prayers. Since we haven’t grown enough to meet the requirements to be placed on the list yet, there isn’t a way to be tested specifically for Jacob yet. I can list the first few requirements that you must meet to be considered to be a donor below. If you meet those five things and you know your blood type then please email melaniewaller1@gmail.com and include your name, phone number, email address to be contacted and your current city. I will be in contact soon.

    The first requirements include……

    Age must be between 18-65.
    Cannot have a diagnosis of diabetes.
    If the donor is hypertensive, thier blood pressure must be controlled on 1 medication.
    Potential donor cannot smoke or use any nicotine product. If currently using, must stop and they can be tested after 6 weeks of not using any nicotine product including vaping.
    Body Mass Index must be 32 or below.

    Again, I appreciate all of you and your prayers for our family.

  21. How do I see if I’m a match. My sweet baby is about same age and I cant begin to imagine what y’all go through. I’ll gladly give him 1 of mine.

  24. Thank you all for your comments and prayers. Since we haven’t grown enough to meet the requirements to be placed on the list yet, there isn’t a way to be tested specifically for Jacob yet. I can list the first few requirements that you must meet to be considered to be a donor below. If you meet those five things and you know your blood type then please email melaniewaller1@gmail.com and include your name, phone number, email address to be contacted and your current city. I will be in contact soon.

    The first requirements include……

    Age must be between 18-65.
    Cannot have a diagnosis of diabetes.
    If the donor is hypertensive, thier blood pressure must be controlled on 1 medication.
    Potential donor cannot smoke or use any nicotine product. If currently using, must stop and they can be tested after 6 weeks of not using any nicotine product including vaping.
    Body Mass Index must be 32 or below.

    Again, I appreciate all of you and your prayers for our family.

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