Meet the Cronins: JC, Elise and their sons, John and Baby Luke.

 

 

 

Almost every parent has probably experienced the urge to check and make sure their sleeping baby is still breathing. For the Cronins, this is not just an unfounded fear but a constant reality. Luke Cronin was born in September 2021 with Pierre Robin sequence

 

After months of delayed and misdiagnoses they finally have a path forward for Luke’s proper treatment and care. But unfortunately, Elise’s leave and job protection are maxed out. In order to provide the best care to Luke, Elise must take 3 months unpaid leave from her job so the Cronins are now also faced with the loss of her income. Additionally, once Elise is able to return to work, Luke will need a specialty caregiver for a few weeks/months before he will be allowed to enroll into a daycare.

 

Luke has all the classic signs of PRS, a smaller-than-normal lower jaw, a tongue that falls back in the throat, and an airway obstruction. He has severe sleep apnea, and feeding difficulties that are all caused by the disorder.

 

 

Instead of enjoying time bonding with Luke while on maternity leave, Elise has been rushing him to numerous doctor visits and consultations. The Cronins knew something was drastically wrong with their son, but no doctor seemed to agree. They kept seeking the best care for him and did not rest until they had a proper diagnosis.

 

Due to Luke's severe Sleep Apnea, the Cronins had to keep a constant watch of Luke while he was sleeping in order to make sure he was still breathing. They took shifts staying awake throughout the night to watch and feed him. Now he is on oxygen while he sleeps, so they can all rest a little easier.

 

 

 

 

 

 

 

Luke had his first (of multiple) surgeries this year on Thursday morning (Jan 13) and they expect he will need to stay in the NICU for a few weeks. The surgery will correct the alignment of Luke’s face and will have a positive effect on his ability to eat since he will become physically capable of reaching the nipple of the bottle. The apnea, labored breathing, snoring, snorting, grunting, and congestion should also significantly reduce post-op, if not resolve entirely. This will mean that he can be weaned from oxygen as well. But before this happens, significant care, multiple surgeries, countless follow-up appointments with 9 specialists (craniofacial team, GI, OT, SLP, Nutrition, ENT, Pulmonary, Urology, and Genetics) and an extended unpaid time off from work for Elise (JC’s employer does not permit absences beyond pre-approved vacation time) are needed to help Luke fully recover from the surgery.

 

 

 

 

 

 

For several years post-op, Luke will continue to be under observation for ear problems (permanent hearing loss and frequent, severe ear infections that require tubes), as well as extensive dental and orthodontic needs (teeth being pulled, multiple craniofacial surgeries, several sets of braces, etc) – these concerns are common in children with severe PRS. The Cronins will be working closely with the speech and feeding teams as he learns how to eat and speak which are both areas that are impacted by this disorder. Lastly, they are beginning to meet with geneticists so Luke’s providers can better understand the underlying cause of his PRS and proactively uncover any missed diagnoses so he can get the care he needs before any complications arise.

 

The cost for the Cronins is significant. These include: Luke’s medical care and additional needs, Elise's extended unpaid Leave of Absence, and finding appropriate care for Luke for the 4-6 weeks between Elise’s LOA and when he is eligible to be enrolled in a traditional daycare.

 

This goal covers: Luke's medical expenses, Elise's lost wages during unpaid leave of absence and additional expenses incurred (special clothing and supplies for Luke, childcare for John when Luke's  care requires it, gas to and from CHOP, daily parking fees for CHOP,  meals and any other needs of the family that may come up during Luke's treatment).

 

If we meet our first goal, we will increase the goal by $5,000 to help cover the cost of care for Luke for when Elise plans to return to work but before Luke will be able to be in a daycare setting.

 

Your gift in any amount will really help the Cronins give the best possible care to their baby boy.

 

If you can not donate, please share this page with your friends and families.

 

Through all of this, the Cronins know that God is always by their side. Prayers for the family, especially Luke, are also very much appreciated.