1 month post transplant update

It’s been a while since I’ve posted an update on Alex and for that I ask for your grace. We have been taking space to adjust to our new normal and are about 4 weeks into this post-transplant journey. His incision where they inserted the donor kidney is healing beautifully. There is a lot of

We got the call!

Update: Alex is still in surgery. OR Nurse called to say kidney is in. They’re still working on him but surgery is going well. Friends and Family, we need some prayers this morning.We received the call we have all been collectively praying for.They have found a viable kidney for my son Alex.The surgery will be

November 7, 2020

I successfully surprised Alex today with a birthday parade. He’s been really grumpy lately and I wasn’t sure if he was going to like it. The New Haven Police Department led the parade with their sirens and speakers. Family and friends decorated their cars and sent gifts. We had a (socially distanced, mask wearing) birthday

October 28, 2020

Alex turns 13 today. It broke my heart to see him so frustrated on this milestone birthday as a dialysis patient in the middle of a pandemic. The team at CCMC are really sweet and did their best to make it special. #AlexsKidneyChampions #FindADonorForAlex #BeADonor #shareaspare #pleaseshare #AlportAwareness #AlportSyndrome #raregeneticdisease #ChronicKidneyDisease #CKD #ChronicIllness #EndStageRenalFailure #dialysis

October 1, 2020

My son Alex was admitted to the hospital again yesterday. During his dialysis treatment, he spiked a fever, had chills, a headache and some vomiting. His fever broke last night and is on antibiotics to fight whatever infection he has. I left the hospital around midnight to get back home to his little brothers and

August 7, 2020

Alex was discharged yesterday evening after a successful surgery and a 2 hour dialysis treatment. Uncle Mark treated him to lunch before returning him home. He woke up today pretty sore and said out loud, ” Ooooof it’s been a couple of months since I had surgery”. Today a very generous and special person gifted

August 6, 2020

Alex was unexpectedly admitted to the hospital yesterday due to catheter malfunction. Doctor believes that Alex had a growth spurt so the limbs of the catheter are not reaching where they should. They will attempt to rewire or replace but keep it on the same side. My uncle stayed with him overnight so I could

July 29, 2020

It has been close to 11 months since Alexander was first admitted to the hospital for respiratory and kidney failure due to the rare genetic disease X-Linked Alport Syndrome. We have put our faith in our medical community, our friends and our family. While we have not yet had a match for a living donor,

June 27, 2020

Just picked up our supplies for the online TRiO Summer Academy at CCSU. THIS is how you set up a student for success. Math. English. Art. Web Design. Technology and a stock of supplies provided. Clear schedule with agenda. Scheduled hours for daily tutoring. We enjoyed unpacking our goodies. This is the first time in

May 18, 2020

UPDATE: It’s been a while since we posted an update. I like to think in our situation that no news is good news. We welcome the calm after so many emotional hospital visits at the beginning of this year. Alex had some trouble with his catheter again recently but x-rays showed that placement is as