Sitting on the couch with her one-and-a-half-year-old, baby boy, Alistair, Tesa Sveter spreads coconut butter all over his body to try and comfort him.
You see, little Alistair was born with a life-threatening condition called Neurocutaneous Melanosis.
It’s an affliction which causes huge growths or moles to grow all over the face, head and body, along with tufts of hair that grow everywhere.
It’s a condition that kills most children who are born with it by the time they are 4 years old, so Tesa must care for her son 24 hours a day to help him with eating and moving and walking and crawling.
”He is the happiest baby in the world and at the end of the day he gives me more life that life itself,” Tesa said, as she begins to cry.
But the most dangerous part of Alistair’s condition is that he can suffer horrific seizures, seizures that could kill him at any moment.
“I saw him struggling one day and immediately realized it was a seizure, it was so horrible, I can’t describe it, but he was holding his head and screaming in pain,” Tesa said.
Ever since the day little Alisair was born, Tesa and her husband Ryce have had to devote enormous amounts of time to caring for their son, so much so that, it actually cost Ryce his job 6 months ago.
He was fired for having to spend too much time away from work and with his little boy.
The family has already been struggling mightily with finances, living with Ryce’s mother battling to pay the bills on time.
But just as Ryce found a new job a few weeks ago, that’s when the family’s only car gave out.
“It is so vital for us to have a working vehicle. Without that car, everything falls apart,” Tesa said.
Yes, without that car, Tesa and Ryce have no way to get their precious baby son to his doctor’s appointments and Ryce has no way to get to his new job.
So now the Spencer Solves It team is stepping in to help this young couple who has had so much thrown at them so early, to get Tesa and Ryce back on the road again.
When I told Tesa we would fix her car up like brand new again and it wouldn’t cost her or Ryce a penny, she broke down crying.
“When you first called Bill, I almost couldn’t breathe. But you were so kind and compassionate and telling me you were going to make this alright. I couldn’t believe it. Sometimes it has felt like our little family has been left behind in this world, but not anymore,” Tesa said, wiping tears from her face and cradling her baby son Alistair in her arms.
More information on Neurocutaneous Melanosis
It is a condition that is incredibly rare and one that little Alistair was born with.
Neurocutaneous Melanosis is a rare congenital syndrome characterized by the presence of large or multiple congenital melanocytic nevi and benign or malignant pigment cell tumors of the leptomeninges.
In other words more familiar to most people, Neurocutaneous Melanosis is a condition that produces large and multiple skin eruptions or moles or nevi all over the patients body.
This can be on the face, the body, the head.
It is also marked by large tufts of hair growing all over the body.
Sadly, the prognosis for patients with symptomatic NCM is quite poor. Median survival time after the onset of symptoms has been estimated at around 6.5 months. Due to the young age at which most NCM patients present with clinical symptoms, the median age of death is approximately 4.5 years old.
At 18 months old, Alistair has already beaten the odds as far as what befalls many young baby’s diagnosed with this condition.
His parents, Ryce and Tesa, are determined to give their beautiful boy the very best care available and all the love they hold in their hearts.