Addison Donnellan memorial, our angel and hero

I am creating this fundraiser for my brother Dominic, and his wife Jenny, as they lay their beautiful daughter Addison to rest. In their journey since April, so much of what has been repeated included “there’s nothing that can be done”. Addison Rose, was born April 27, 2023, 16 doctors and nurses were in the room for the delivery, yet the entire pregnancy gave no indication of an issue. 5 days prior to her birth, we learned there was an issue with her heart. From that point on, Dominic took charge, dropped everything, and carried his wife and daughter through the most unimaginable storm a man could face. Our research and knowledge from the doctors who stared at her results and heart on the screen in awe, concluded this specific disease has only 7 current cases. With the hope of a heart transplant in the near future, Dominic and Jenny were told Addison would need to gain weight, among other various guidelines. Addison was sent home 10 days after birth. No at home equipment was needed, they were able to fully enjoy her without restrictions. The bottle feedings were timed, one post my brother made included “keep eating baby girl!”…he was sleeping about 3 hours per night, watching her weight increase. Addison gave them her first smile at 7 weeks old, the whole world knew about that smile. Jenny purchased a Zoo membership, their hope of her making it to transplant held strong. They kept their faith, Addison was growing, thriving, smiling, cooing, and snuggling them tight. Two weeks ago, she stopped feeding, and was crying almost uncontrollably. Addison was taken in to the hospital, we learned fluid had built up around her heart, and her lung collapsed. Dear God no, please let us keep this baby, what can be done? Again, “there’s nothing we can do”. They now lived at the hospital, transplant no longer an option, Addison continued to smile. Of Addison’s 87 days on Earth, 33 nights were spent in the hospital. Not once did they leave her side, she never knew anything but love, she was going off oxygen and bottles only. Dominic and Jenny were cleared to leave the hospital on day 7 of her stay, to take Addison to the zoo, this was one of many plans they were able to fulfill. Addison wanted to be here, she fought, sometimes watching her fight was very difficult to witness. Not once did she sleep in a bed, she slept on Dominic’s chest every night. I told my brother he was the bravest man on Earth, he replied “I have to handle what’s in front of me”. Jenny was barely speaking, when she did speak it was “it’s not over until it’s over”, Addison stared in to her Mothers eyes with so much love. Addison passed away in their arms on July 23rd. This is far from over, although Addison is now at peace. Nothing can be done? Well, we can do something for them. This entire week has consisted of funeral homes, the cemetery, I never realized how much goes in to that, it’s almost unreal that there isn’t a “break” out there for a baby, or for a family with such intense medical bills and burial expenses. We can soften the blows, although Dominic still says “I should be ok”. What a brave man, we will make sure you’re both ok, something can be done from here on. Help me present some bit of relief to them. Thank you.

#NDUFB11 #hypertrophicardiomyopathy

#rmhc #hearthealth #mitochondria