Miles Kane AKA MK

Hi my name is Audrey and I am Anna's sister and Miles Kane's Auntie. Early this year we found out that our sweet Miles was extra special

in more than one way. He was diagnosed with Noonan Syndrome halfway through Anna's pregnancy which prompted more testing and a referral

to Luries Children Hospital. It was there that Anna and Dave found out just how special MK is. Due to his Noonan Syndrome diagnosis he also

suffers from severe hypertrophic biventricular dysfunction. Basically his heart is too thick and that can be really difficult to treat

especially in Miles case as it is one of the worst they have seen. This news was alot to digest for them as you can imagine but Miles

continued to grow and thrive until around week 37. They were told to prepare for the worst but hope for the best. Something no parent should

ever hear but they took it with such grace and powered forward. Miles made his grand entrance into this world on July 12th and he amazed

everyone including the drs. He was stablized and transferred to the NICU where they did alot of tests to confirm his diagnosis and determine

the best plan of action. It's been a rollercoaster for Anna and Dave and baby Miles. He is always keeping them on their toes but his

medical team is prepared for anything he decides to throw at them. He is currently in the CCU at Luries where he will remain until they

can determine what the next steps are. Due to this Anna and Dave have been living at the Ronald McDonalds House that has so graciously been

provided for them. I know they are eternally grateful for the oppurtunity to live a minute away from MK with the ability to be with him

all of the time. Miles has two older siblings- Lily his amazing big sister and Henry his spunky big brother. They are adjusting as well as

possible with visits to Mom and Dad. We are hopeful they can meet their strong little brother very soon.

Miles is still intubated in the CCU as they try and figure out a few things with his complicated body. Extubation is the goal and if his

heart can not tolerate that then the next step is to be put on the donor list. Hearing the words-Heart Transplant-in regards to your precious

baby is devastating. But we have faith in his medical team and faith in Miles strength. He is a fighter in every sense of the word. His name

actually means Soldier/Little Battler.

I am here to ask for your help. While nobody wants to ask for help this is the situation in which help is needed. The medical bills alone

will be astronomical regardless of insurance. Your gracious donations would help make this journey a little less stressful. It would go

towards gas money to be able to have his siblings visit as much as possible. Therapies, food, bills that are still coming in at home. We

have had so many people reaching out asking how they can help. This is how. This family is truly incredible and so is our community.

Please help us support them as Miles fights for his life.

"Be present.I would encourage you with all of my heart just to be present. Be present and open to the moment that is unfolding before you.

Because ultimately your life is made up of moments. So dont miss them by lost in the past or anticipating the future" Jessica Lange