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CULVER - At just two and a half years old, Jaxson Laurita has had his share of bouts with illness. Last week, Jaxson and his family were granted a wish by the Make A Wish Foundation, bringing the family to Culver and the shores of Lake Maxinkuckee as their destination.
âWe got a letter in the mail stating we were granted a wish,â said Jaxsonâs mother Lori Laurita. âIt was pretty exciting.â
The Colorado residents made their way to the lakefront Portledge Cottage in Culver. Dad Jeff Laurita is a South Bend native and mom originates from Bremen. The family has many ties in the area and found Culver the perfect setting for some family relaxation.
âThey interviewed Jaxson to find out what he liked. He loves Mickey Mouse, he loves his Doritoâs, he loves Frosted Flakes ÂÂâ because heâs two and a half. Heâs just happy. Jaxson wakes up heâs happy,â Jaxsonâs mother said. âHe knows that if heâs not in pain heâs having a good day; he doesnât care about anything else.â
In planning their wish, the Lauritas considered going to Disney World or Disneyland because of Jaxson fondness for Mickey Mouse.
âBottom line is the most important thing has always been family. Itâs kind of how you circle around and be happy. We also wanted a vacation because I thought weâve been through a lot and we deserved a vacation,â said Lori.
After some consideration the family opted to come to Culver.
âAfter I talked to our Wish Coordinator I told her, âI know this sounds weird and I know youâre going to think this is silly but Disneyland would be too overstimulating for him,ââ said Jaxsonâs mother. âHeâs two and a half would he really enjoy it? Even though he likes Mickey Mouse, he likes Mickey Mouse on TV.â
The foundation far exceeded Loriâs expectations. She had only suggested a one bedroom on the lake where the family would still have fun but be close enough to their relatives while on vacation.
âWe wanted to make sure that we were able to celebrate with our family. That was a big part of it and Jeff and I have always been grateful for everything theyâve done â with staying with us and really helping us stay as a family and making it possible,â Lori said. âWe wanted a vacation close to family because thatâs what Jaxson needs and thatâs what Dominic (Jaxsonâs older brother) needs because itâs so important.â
Portledge Cottage was built in 1905 with a three-sided lakefront porch overlooking Lake Maxinkuckee. It has 6 bedrooms and sleeps 10 and features a lake-level yard to a sandy beach. The cottage has enough room for Jaxsonâs cousins to run around, much to Loriâs delight.
âWeâve had a lot of awesome support all throughout. That helped get us through it because we stayed focused on staying positive and weâve seen the worst of times,â said Jaxsonâs father, Jeff.
Jaxson was born prematurely at 1 pound 5 ounces. Since his birth he has been in and out of the hospital.
Initially the infant spent his early days at St. Joseph Regional Medical Center in South Bend later moving to the Childrenâs Hospital of Denver.
The family admits to having their scares and recollect an occasion when Jaxson had a fever of 105 degrees and a spinal tap had to be done.
âHe had to get a trach in. At 6 months he was on a ventilator and trach dependent. He had to get a g-button (feeding tube) since he was working so hard to breath and with his chronic lung problems,â Lori explained.
The Laurita family has had to learn how to take care of Jaxson. sometimes the family has been the ones to help educate nurses and physicians on the best methods to care for Jaxson.
âAt 6 months, we had to learn how to take care of him since you have all this new equipment and basically thatâs your new norm,â said Lori.
âLoriâs skills and my skills as far as taking care of him are the equivalent of being a NiCU nurse,â chuckled Jeff as he explained how as parents they had to learn and spend time in the Neonatal Intensive Care Unit (NiCU) to fully provide for Jaxson.
âWe stayed there until he was 10 months until we could be released with home nursing,âsaid Lori. âAt that point we did come home for 6 months. Jaxson was still on the trach and ventilator dependent but he was thriving.â
The pair has remained attentive to their son and conscious of his needs. Jaxson comes with his chronic conditions but the family knew there was something awry when Jaxson was having trouble swallowing.
âWe knew something was wrong and they kept sending us home telling us this is your chronic kid, this is your chronic kid. You know he has issues and they kind of just kept sending us home. But Jeff and I wouldnât let it go,â Lori recalled.
âWe probably had four or five doctors appointments where they kept sending us home like we donât know whatâs going on and we canât figure it out. We kept talking to Â nutritionist and dieticiansâ, said Jeff.
Lori was fortunate to have a girlfriend who was doing her residency at the childrenâs hospital. Loriâs friend directed her as to what questions to ask to get an ultrasound.
âThatâs when they found the tumor,â said Lori. âHe had a tumor the size of a softball.â
Jeff said, âHe was 15 pounds and the thing was softball sized, in the middle of his liver, 9 cm.â
The little one had to go through six cycles of chemotherapy before doctors were able to operate, leading to a final chemo cycle.
âThey had taken out 75% of his liver but kids regenerate it so we were lucky for that,â said Jaxsonâs mother.
Throughout his ordeals, Jaxson appears well and unphased as he enjoyed time with his family during the vacation sponsored by the Make A Wish Foundation. It was a break from the more than 300 days the child has spent in the hospital, according to his father.
The Lauritas ended their vacation on the lake cottage on Wednesday Aug. 14. Jaxson is scheduled to have his trachÂ permanently removed on Aug. 23.Â
Looking forward, the family plans to keep to Dominicâs sports schedule, introduce Jaxson to his first sport and enjoy their son without worrying about so much equipment to lug around. He was taken off of hisÂ ventilatorÂ in June with a goodÂ prognosis.Â
The two-year-old is new to walking and with the removal of his trach he will be able to use his voice.
âThatâs the next big thing for him,â said Jeff. âHe has a paralyzed vocal chord. He can vocalize pretty well and you can make out a lot of what he says but he has to work on getting louder with it so he can work on pulling that other vocal chord over.â
âWe heard him cry for the first time a couple weeks ago,â said Lori. âIt was the first time we heard him cry and it was the first time we heard him laugh and I just thinkÂ thatâsÂ huge.â