Everlee was born at 29 weeks and at 10 days old she got a really bad infection called NEC and while we were lucky she survived, as some kids pass within 24 hours. Around 2am she coded and they did CPR until she was Intubaded. Only a couple minutes. She was intubated for 18 days and underwent surgery to remove half of her small intestine that died from the infection. Because of the extent of the infection and the loss of Oxygen we found out in October of that year she had severe brain damage.
Everlee has a feeding pump that runs overnight, she does eat puréed baby food during the day and has bolus feedings to get extra calories and keep hydrated. She is mainly in a wheelchair but I learning to take a couple steps in a gait trainer. She is nonverbal, nonmobile without equipment. She is a very happy baby considering her limitations and she loves people watching! We are lucky enough to have PCA staff with her during waking hours. We just moved to a new home to better meet her needs in May. I think Everlee would love the splashy seat as she has never sat up in the bathtub to play or the go to seat to make shopping trips easier as well as restaurants and such! Thank you!
Oak View Elementary School
The students in the Connect program at OakView have a wide range of abilities and needs, but one common factor is that all students have sensory-motor integration disruptions and require adapted motor and sensory equipment. Students have the opportunity to engage in scheduled and as needed motor breaks in a large gym space or even the hallways of the school.
The students require adapted equipment to be able to ride bicycles/tricycles as their peers do. I would love to give my students the opportunity to experience recreation, and just ‘being a kid’, like their peers do. An adapted bicycle or tricycle would be able to be used by my students in the hallways of the school or in the large gym space and provide them with the opportunity to take gross motor breaks, learn a skills, a have fun being a kid.
I (Lori) was in labor for over 36 hours with failure to progress and Alex became ‘stuck’. The amount of pressure on his head caused Alex to have multiple strokes at birth which led to hypoxia and seizures. Because of the extent of his brain trauma and injuries, Alex now suffers from quadriplegic spastic cerebral palsy, cognitive blindness (cortical visual impairment), seizures, global developmental delays, feeding and speech impairment, and hip dysplasia. He also had infantile spasms when he was 6 months old, which left him on a course of extremely high doses of steroids for 7 months. This caused Alex to also have adrenal insufficiency and severe reflux up until about a month ago.
As mentioned above, Alex suffers from quadriplegic spastic cerebral palsy, cognitive blindness (cortical visual impairment), seizures, global developmental delays, feeding and speech impairment, and hip dysplasia. He also had infantile spasms when he was 6 months old, which left him on a course of extremely high doses of steroids for 7 months. Alex has multiple therapies daily that include: physical therapy, occupational therapy, vision therapy, feeding and speech therapy, developmental therapy, and nutrition. For only being 2 years old, he has endured a lot and has proven to be a miracle. He is a strong little boy and a fighter! He never ever gives up on anything!
Alex is unable to roll over, crawl (although he tries so hard), stand, or walk. He pushes up on his legs to stand and tries so hard to pick up his leg to take a step, but then falls down. He wants so badly to be able to stand/walk. The small Firefly Upsee would allow Alex to participate in more activities and help him be upright and supported while being more independent. We want nothing more than to be able to give our son all of the opportunities that we can while allowing him to be as independent, as possible. Your help and assistance with a Firefly Upsee would be so greatly appreciated and a miracle for our little boy and we would love (if we would be allowed) to donate it back for another child to use when Alex is done.
This is the Thank you from Lori we can’t thank your foundation enough! That was the best feeling in the world to see Alex walk for the first time!!!”
Wyatt is a four-year-old little boy who suffered an anoxic brain injury at 18 months old from nearly drowning. Wyatt was excited to use a product from Litegait in his therapy, and Chase’s Warrior Foundation was able to donate to help a therapy company in Florida purchase this product. The family was very appreciated in our mission to bring home to children with special needs. The link below will bring you to Wyatt’s FaceBook Page showing how hard he works in his therapy sessions.
Chase Lykken Warrior Foundation, thank you from the bottom of our heart to contributing toward the lite gait system for Wyatt Zachritz and all the children at Kids on the Move physical therapy. This system has been helping Wyatt learn to stand with his weight as well as initiating steps. That is HUGE in his recovery! We like most parents, want our son to fully recover. So we ask for people to come along side us to help, because it takes a village to help a child recover for sure! I just want to say thank you from the bottom of my heart for being a part of Wyatt’s village! Thank you!
It’s true it does take a village, you can be a part of that village by donating to our foundation. Just click on the donate button on the top of our webpage, and your dollars will go to a great cause.
Chases’s Warrior Foundation donated an Upsee to Surai. Surai is practicing in her upsee so she can walk down the aisle as a flower girl in her parent’s renewal of their vows. Surai’s parents are so thankful for the donation that made their day very special.
Leo has a very manageable genetic condition which our state screens for at birth, Methylmalonic Acidemia (MMA). Unfortunately, the state of Minnesota changed providers the year he was born, so his MMA was not caught or effectively managed. As Leo’s condition was untreated, he had a stroke and almost died in the emergency room at 16 months.
Leo had to re-learn all his basic skills (swallowing, talking, using his fingers, rolling over and crawling). In addition to his genetic condition, Leo now has a secondary diagnosis of di-pelagic cerebral palsy with a movement disorder.
He spent a month and a half in the hospital. Leo has done better than the diagnosing physicians said he would. He is a hard worker and a charmer and continues to make progress.
Thank you Chases Warrior Foundation for the awesome gift of an Upsee for Brooke. Brooke is 11 and has a diagnosis of DDX3X, Epliepsy & Mitochondrial dysfunction. Brooke has many challenges and one of them is hypotonia which means her muscles are weak & floppy and she is unable to stand or walk on her own. Brooke has worked hard in therapy over the years to build her muscles and with the help of leg braces and a stander is able to stand to get pressure through her legs and feet which is very important for bone development. Brooke loves to have us help her walk but because she doesn’t actively take her own steps this has been hard to do.
Now that we have the UpSee Brooke is able to walk with us as often as she wants and LOVES it. She is trying to take some active steps and is really working her muscles and building her bone density. Brooke’s therapists have said this is the best kind of therapy for her. In addition to therapeutic use, the UpSee also provides Brooke with the ability to do things that other kids her age are able to do. She can kick a ball, help walk the dog and can stand at the fence and cheer for her brother at baseball games.
Thank you again to everyone who has donated to help provide children like Brooke with this truly amazing equipment which gives her the ability to take part in activities that she otherwise would not be able to participate in.
Mike & Stacey Pieper
Nolan is 7 years old. At four months old he started having seizures. They quickly evolved into Infantile Spasms, a devastating seizure type. Nolan was having hundreds of seizures a day. By the time he was 22 months old, he had 10+ failed meds. Statically speaking, he was given a 2% chance that meds would help his seizures. At that time, we were given a 50% chance that removing a portion of his brain (his “hot spot” – the area where his seizures started) would help his seizures. We went for it. But unfortunately surgery only helped for 10 days. Therefore, we were back to trying other meds. Over the past approximately 3 years, we found a pretty good cocktail and have eliminated his seizures to only a handful a year.
Due to Nolan’s seizures, he is severally physically and cognitively delayed. He is functionally nonverbal as his communication portion of his brain was removed.
Nolan has spent nearly his entire life in therapy but he goes through life with a big smile on his face.
This bike has given Nolan a chance to be like a neurotypical kid, cruising around on his bike on our neighborhood trails. He loves his new bike. He is full of smiles and giggles on the bike. We won’t tell him that this is also physical therapy.
Click HERE to see Nolan live in action!
Lucy Joan Gallagher was born April 9th, 2014 with a rare genetic disorder. Lucy lives
in Bloomington with her mom.
Lucy now 2 is sweet and precious. When she was about 4-5 months old she
developed signs and symptoms of a genetic disorder. Complete genetic testing
confirmed that Lucy has a RARE Metabolic Disorder, CDG Type 1A (congenital
disorder of glycosylation type 1a). It is a very complex disorder with varying
symptoms and uncertain outcomes.
Lucy has been hospitalized 3 times including stays for feeding tube placement, a
seizure and an infection at the feeding tube site.
Some of Lucy’s problems include:
• Developmental delays
• Hypotonia (low muscle tone)
• Failure to thrive (slow growth) Lucy has a feeding tube
• Blood clotting disorder
• Esotropia (crossed eyes)
Lucy is receiving occupational and physical therapy and will eventually get speech
Lucy will have an ongoing need for special needs clothing, therapies and adaptive
equipment such as special needs strollers, standers, walkers, wheel chairs, bathing
chairs, special sitting chairs, car seats and beds to assist with mobility and daily
Lucy has been enjoying the Upsee when her cousins are over it is such a wonderful piece of equipment.
Daylan is 13 years old and is an 8th grader at Anoka Middle School. He is has an amazing personality and an unbelievably kind heart. He has always loved to ride and do tricks on his BMX bike, enjoys skateboarding, snowboarding and had a dream to one day play NFL football for the Oakland Raiders. On 5/30/16 in Northome, MN. Daylan and my cousin were on a 4 wheeler and lost control after swerving for a turtle. We were told the night of his accident that the injury was most likely permanent and there was little chances of him ever walking again. He is now paralyzed with a complete T7 spinal cord injury. There was C2 had a hairline fracture and his spine was fractured from T6 to T9. He had severe chest trauma and some minor scrapes and bruises. On 5/31/16 had a titanium rod spinal fusion that was placed from T4 to T11. We also found out that because of the spinal cord injury he has Autonomic Dysreflexia. He spent nearly a month at North Memorial due to respiratory complications before being transferred to Gillette Children’s for rehab for 5 1/2 weeks. We were able to bring him home on August 5th for a month but then he began to have breathing problems a short time after getting home, and had to return to Gillette’s from Sept 7th to the 21st after he needed another tracheotomy. When the second breathing tube was put in they scraped the lining of his vocal cords and there is some thick scarring preventing them from opening and closing. We have began the process of repairing the vocal cords and will be making several trips back and forth to the Mayo Clinic in Rochester. On October 20th, we had an unsuccessful procedure done at HCMC by someone Gillette referred us to and the doctor was not confident in any of the options for Daylan, and made the whole things seem very scary. I was not comfortable with making any decision before getting a second opinion. So we went to Mayo for that and will go back on November 4th to have a complete nerve, joint and cord exam done in the operating room while Daylan is sedated so the doctor can decide what plan is going to work best. She was able to explain things to us so that even Daylan understands what the process is going to look like. She is estimating another 6 to 9 months before he is able to remove the trach again.
I know every mom probably says this about their child but I honestly believe my son is the strongest and most amazing kid ever! Through all of this, he has had very few complaints, he continues to show his strength and courage by teaching others about his injury and by staying so positive. The way he is able to process things and find positives in every situation just amazes me more and more every day. I am so proud to be his mom!! He has decided that he wants to start saving up his money so he can buy a laptop with a higher quality video camera. He wants to create a Youtube channel that will be for teenagers who are going through similar injuries so he can teach them how he is dealing with his injury, how he is emotionally coping with it and how he does specific activities throughout his day without the use of his lower body. I think that Daylan is going to turn this horrible horrible experience into something big and he will be able to help so many others around him.
I know I have said it already, but I feel the need to say it again, I cannot even begin to express how thankful I am for all the love and support that has been shown to us during this difficult time. The generous donation from Chase’s Warrior Foundation made it possible to have a ramp custom built to fit our new yard so that Daylan is able to roam freely without any restrictions. We ended with the total length being 102 feet long with 36 posts and 4 different landing pads. The ramp starts at the front door and then wraps around the side of the house, slanting down a hill and then ends in the back yard right at the driveway.
To help Daylan and his family you can donate to their Go Fund Me page here:
Jacob is a vibrant six year old boy born with Spastic Quadriplegia Cerebral Palsy. In essence, he has very limited use of his arms and legs; he has been confined to a wheel chair and limited to interactions he can do sitting in his chiar….up until now. Thanks to Chase’s Warrior Foundation Jacob has been able to move around and interact with his family and friends using a mobility device donated by CWF called the Upsee. Using the Upsee Jacob is better able to engage, out of his wheelchair, with those around him. He can walk, run and play with his Upsee. Having fun in the Upsee is a wonderful way to incorporate physical therapy sessions that he can actually enjoy. His favorite things to do in his Upsee are play baseball, show off at family picnics, and simply be a part of what ever is going on with his friends and family. Thank you CWF for bringing the joy of mobility to our cherished little boy.
Thank You again for this wonderful gift and Thank You for all of the efforts CWF provides to families as ours.
In the words of her mother, Jessica Nutz -“This is Abbygail, she is 9 years old. She is sweet, smiley, vibrant and has a great sense of humor. Abby has cerebral palsy and she has challenges with muscle control and is also nonverbal. She can express her needs and wants through her expressions and eye movements. Abby has two brothers and one sister. We take her with us on camping trips, hiking, boating, swimming, and walks. She also enjoys school, animals, her friends, and family. Abby loves to be with other people and doing what they are doing (no matter what it is). At therapy when she practices riding the bikes her whole face lights up. When asked if she wants one she looks up for yes and has a smile from ear to ear. ”
Abby’s family had started a fundraiser to purchase a special needs bike from Freedom Concepts- thanks to the many generous donations to CWF, we were able to make a considerable donation to help purchase this bike! Congrats Abby! Enjoy your new bike!