Our sweet Lukka was born on a hot summer day via an unexpected c-section 3 weeks early. Although the pre-screening tests came back normal, Lukka was born with a birth defect called hypospadias. He also failed his newborn hearing screen, and couldn’t breastfeed. After getting home Lukka was having a challenging time swallowing while also vomiting constantly. So, at 3 months old we saw a gastroenterologist, got treated for acid reflux and he needed nectar thickened formula. At 7 months old he had his first surgery to correct his lip/tongue tie, and his hypospadias. Fixing the lip/tongue tie I was hopeful it would help the swallowing and vomiting issue, it did not. We went through multiple reflux medications, different formulas, nothing was helping our poor boy. Also, Lukka was not meeting milestones as he should, so I started him in physical, speech and occupational therapy. After seeing a genetics doctor, at 13 months we found out Lukkas’s diagnosis of Distal 18q deletion, resulting in Lukka seeing multiple specialists, getting bloodwork and procedures done to see what is or is not affected by this disorder. At 15 months Lukka was underweight and the decision was made to place a feeding tube, or g-tube. This was the start of a whole new list of struggles for him and us.
Despite it all, our Lukka is truly the bravest, strongest, most loving boy. He has been through more than any one person should, let alone a child, MY child. At 7 years old Lukka has been under anesthesia or sedation fourteen times. He is on his fifth set of tubes in his ears. He has moderate hearing loss to both ears; this is due to his disorder it will only progressively get worse over time. Unfortunately, he can’t tolerate his hearing aids because he has sensory processing disorder, meaning he needs a lot of sensory input throughout his day to help him regulate his body, but also something like hearing aids in his ears can feel like torture to him. Some of his other diagnoses are ADHD, Autism, Anxiety, hypotonia, nystagmus, he's non-verbal, and in March of 2021 from an MRI result we found he had a brain tumor in his left thalamus. Thank God it is benign but nonetheless it's a tumor in his brain that can't be surgically removed. So, for now we monitor it by MRI to see if it has grown. Since Lukka is non-verbal, he uses a talker or what's called a communication speech device. He also will take our hand and guide us to something he needs to want, but he is unable to communicate pain which is hard. In times of frustration Lukka will sometimes hit his head with 1 or 2 hands and sometimes closed fists, not realizing he’s hurting himself. We have tried multiple medications to help with Lukkas’s anxiety with no success or relief for him yet.
I feel that a service dog will help my son to have a better quality of life. Whether helping keep Lukka safe and near if he tries to wander off, or hear sounds that Lukka can’t hear, giving deep pressure when he's having a tough time and needs regulation. Lukka is truly such a sweet boy. If you meet him, you will love him. If you hear him giggle, you're giggling. He is the light of my life, which makes sense since his name means “light.” He has brought joy, love, patience and so much more into our hearts and lives. Lukka will live with us until I am not capable anymore, and when that day comes, I pray that he can be as independent as he can, doing as much as he can for himself in his day-to-day life. The future is unknown, and this world is not set up for people like our Lukka. Our family’s life is limited due to not being able to go to certain places or do certain things because it’s difficult for him. But that’s not fair to anyone. I want us to go everywhere and anywhere, I don’t want his disabilities to hinder his life, or our family’s. I want Lukka to have the best life I can give him. A service dog will help him with this 💙.
You can also mail a check or money order to:
W.A.G.S. 4 Kids, 112 East Center Street, Berea, OH 44017
Please make a memo that your donation is for Lukka