PARIS — When the newlyweds moved into the neighborhood, just a few houses down from Kathy Deluca, she was excited to meet and welcome them. After a while, she knew it would only be a matter of time before they became part of the community.

She couldn’t have known they’d become part of the family.

As Deluca describes her neighborhood, houses huddled on criss-crossing streets where neighbors plow your driveway, it’s easy to envision friendly faces knocking on their neighbors’ door, asking for milk, sugar, or eggs pops.

Except Deluca doesn’t trade in milk, and her new neighbors needed much more than ingredients for cookies; the bartender and co-owner of Smiling Moose Tavern in Paris grew estatic when Israelle and Adam Welch, her new neighbors, had their first child.

Which was when she found out something was wrong their newborn.

Just a few week after birth, Israelle – ‘Izzy’ – to just about everyone – and Adam Welch’s son Titan was diagnosed with Treacher Collins Syndrome, a condition that alters the development of facial bones and tissue.

Though the diagnosis was a shock to the young couple, they had little time to digest the news; the condition meant Titan had to face a barrage of doctors and tests, as his parents shouldered medical terminology, sleepless nights, and financial insecurity.

Concerned, Deluca decided to help out -by raising a pint glass.

Coming home

After growing up in Harrison and Paris, Israelle met Adam Welch when he moved into a condo next to the daycare she worked at.

After hitting it off, they married two summers ago and eventually moved into a house just outside downtown Paris. Though she did not always want kids, Titan was planned.

‘They kind of drive me nuts,’ she laughed.

At one week, doctors said her now 10-month year old son had TCS. The physical appearance of the gene disorder varies, but Titan possesed a few telltale characteristics: his eyes slant downward, he’s deaf, has a cleft palate which makes eating difficult, and only breathes through his nose. Titan also has trouble walking because his muscle tissue is underdeveloped.

The condition is a genetic birth disorder that can be passed down from parents, or caused by gene mutation during gestation. It’s rare, affecting about one in every 50,000 births, about 60 percent which are genetic mutations and not passed through family medical history; the fetus itself creates the condition. Lizzy’s pregnancy was normal, and there were no warning signs from either parents’ family medical history.

According to the Boston Children’s Hospital, whose craniofacial department specializes in treating TCS and similar conditions, if one parent has the syndrome, there is a 50 percent chance that the child will be born with the disorder. Conversely, unaffected parents who have one child with Treacher Collins syndrome rarely give birth to a second child with the condition.

The hospital, which annually treats over 500 patients with facial anomalies, says doctors usually diagnosis the condition at birth.

The couple is now awaiting testing to determine if they carry the gene linked to its appearance. If there’s a chance of passing down the gene, Izzy says they’ll never take the risk of having another child.

‘He’s on the mild side. Since I’ve had him I’ve had to stop working. We’ve been in Boston every week. Things people take for granted, like babies laughing – he just laughed for the first time the other day,’ Welch said.

Unheard

Titan’s condition has compounded the task of raising a newborn. He requires almost constant attention to ensure he’s breathing properly, and the Izzy frets he’ll develop a cold, congesting his small nasal passageways.

The root cause for the majority of Titan’s problems the underdeveloped bones in his skull. His jaw is too small for him to breath through his mouth, making his breathing laborious and difficult. Izzy is too scared to sleep in separate rooms, and the parents sleep only a few hours a night. His case is considered mild.

Though his breathing is the primary concern, he’s also deaf; one ear canal is missing, and the other is incomplete.

‘Riding in the car is very hard. Normally you’d be able to talk to a kid and calm them down because they hear you. He doesn’t. If he wakes up in a room and can’t see someone, he’s terrified,’ Izzy said.

Generally, people perceive sound through vibrations passing through the air, and vibrations stirring bones in the inner ear and skull. The later create the perception of hearing, just as though sounds had passed through ear canals.

Titan’s hope lays in new types of hearing aids. He perceives tones through bones in his inner ear, and wears an amplifier around his head to help magnify those vibrations.

When he’s older, surgeons can reconstruct his ear canals and anchor amplifying studs into the skull behind the ear can provide a permanent solution.

‘Even though he doesn’t hear there’s other ways he’s compensated – he can spot a shadow before it’s there.’

Medical costs

For now, the medical bills are being picked up by MaineCare, but Izzy worries; Titan’s has twice had his insurance dropped.

Adam’s work insurance is cost prohibitive, and not having coverage isn’t an option. A recent sleep test cost more than $8,000, and when speech and physical therapists aren’t visiting the house, they make weekly trips to visit specialists in Boston.

‘We don’t make the money,’ she said.

The couple is looking into the MaineCare-run Katie Beckett Program, which provides tens-of-thousands of dollars in assistance to low-income families with children suffering from severe, long-term medical problems.

Izzy says the threat of losing insurance again terrifies her.

‘I’ve worked in this state since I was 13-years old. We don’t ask for any assistance at all, but a state my whole family has paid taxes into our whole lives? I think he deserves insurance.’

Titan’s first surgery – to partial remove a cleft palate, which doctors say will help him eat and breath more normally – is scheduled for April.

A drop in the glass

Kathy has owned the tavern with husband Dan since 2004, and it has become a local favorite, offering filling food, microbrewed beer, wine, and weekend music.

‘One of the reasons we opened this tavern was to give back to the community,’ Deluca said, cradling Titan in her arms as she talked. The couple gives food baskets at Thanksgiving and adopts a family at Christmas.

Which may explain why, when she learned of Titan’s condition and the Welch’s uphill battle, she was determined to do her part.

She started looking for ways to help. At a friend’s suggestion, the bar began selling extra, unused pint glasses for $1, and Adam created informational posters to put around the bar.

Deluca said there’s been a tremendous outpour of support, especially from families who have young kids of their own.

‘They look at this and realize how fortunate they are. They don’t even want the pint glasses.’

So far, she estimates they’ve raised over $200.

‘When it hits close to home it’s more special,’ she said


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