Noel

CES Member

Noel is born with a major cardiopathy, Total Abnormal Pulmunary Venous Return (TAPVR) and a policystic kidney.
The cardiac desease has been fixed after 20 days and the affected kidney never worked while the other kidney is compensating pretty well.
He also have mild Craniofacial malformations (the left side is bigger than the right),  ears with a preauricular pit and  tag, scoliosis, synostosis of  two ribs, sacral dimple, mild hypospadiaand right cryptorchidism, like all the most famous leader in the world, so be carefull, because he has the same nature! :)

Noel experience several infections at urinary track for a bilateral vesicoureteral reflux fault, so it really seems CES people are more susceptible to infections in the most affected areas of the body.
Due to these frequent infections, Noel has been hospitalized several times for several consecutive months so we can say he almost spent half of hist life in a p

Besides, Noel, now 15th months, is a beautiful and sweet baby boy, a very smart one that face the life with a unique bravery and strengh… we only see in common with the other CES kids we got in touch.
Unfortunately, the last infection started on January 2014 provoked an autoimmune reaction called MAS and he seriuosly risked to die.
But also in this case, he got it and succeed!

On the end of May 2014, doctors fixed a vesico uretral reflux and we hope this surgery can stop his frequent infections.

At moment, Noel is experience a stable situation and gaining energy althought it has been very demanding with 4 times per week rehab to recover his psicomotorial delay he gained during his extended hospitalizations.
Once again, he turned into a fighter and only after 5 months we went back crawling and making his first steps again.
His therapist expect him to start walking within his second birthday.
It wouldn't be any better gift for us.

UPDATE

Eventually a miracle happened. It lated one year – another , very intensive and demanding for Noel and all of us – but happened, generating an undescribable joy.
On mid September 2015 Noel moved his first step totally alone in our dining room, one month after the ultimate stop of medications and a long and relaxing holiday in the little volcanic island of Ischia.
Unfortunately, in the previuos year Noel had been back to hospital for two consecutive corrective surgeries in a short frame to fix his malformations of urinary track (both congenitals and the ones caused by the previuos operation). Also in this case, Noel recovered in a brilliant way from his surgeries.
But another, even bigger, miracle happened few weeks ago. Ultrasounds confirmed that Noel healed from a joint arthritis  (knees mostrly, but also ankles, elbows, wrists) which had been diagnosed few month before but we , as parents, had a presumption much more before.
Noel keep making us astonished everyday. He got back an inner peace which is touching for us, mostly due to an almost complete lack of medical and hospital interferences, an healthy routine of school time and relax plus the relation with his younger brother born in the past year.
We are very positive and confident about the fact we left behind the hardest part and now we ready to accompany our figher with his invincible smile along the new challenges of his growth and life.