Nykys Battle against Nuero Muscular Scoliosis

Hello,

Our Names are Dezi, and Randy Svancara, we our Nykolaus Skye's Parents.

Nykolaus was born May 8, 2007 one of the best days of our lives. When Nyk was about 4 months old he started to Infantile Spasms, His head was very large which concerned the doctors so the did some medical scans. We then met with Dr. James Bale Jr. out of Utah Primary Childrens Hospital. He put Nykolaus on a Shot treatment called HCTH at 4months olds. It was unsuccessful did not help his seizures at all. We were referred to a Eye doctor named Dr. Elliott who diagnosed Nyk with Septo Optic Dysplasia, Optic Nerve Hypoplasia, Mental Delay. He told us that our son was born completely blind. That his Optic Nerve did not connect to his Optic Disc, That he is prone to seizures his whole life. They then tried keppra, seizure medication they only give to patients that young that have bad seizures.

I can't remember a day since Nyk was 5 months old where he hasn't had to take a nasty tasting seizure medication. Today Nyk Currently takes Keppra, trileptal, Sabril, epidiolex, depacote, vitamin b6, miralax, exlax, Emergency Meds- (lorazapam, diazapam). As his mother i have given him his meds everyday making it 12,410 times. My husband and I both have attended Idaho state University. Randy has a Associates Degree in Applied Science. Automachanics and more credits that could be applied for a Bachelors Degree. I graduated in April with a associate in applied science medical Billing and Coding. We own Skyes Landscaping & Services LLC. to keep making a living to take care of our children.

Nykolaus was diagnosed with Scoliosis when he was about 5. He can't sit on his own, walk, or say full sentences. But he is Very smart in his own way. He has come so far. Nyk is now 17, in May he will be 18. With his scoliosis severely progressing because he is growing and turning into a young man.

The doctors at St. Lukes want to do surgery, because once his back hits a certain percentage curve it will start to suffocate his organs. Nyk is extremely flexible, for all his medical conditions and stuff he knows his own body. When we do regular blood work for Nyk it throws him into severe life-threatening seizures for about 2 weeks every time. So, the option for surgery is very scary and to risky so we are not considering it doctors recommendation. Nyk is so sensitive when he has a bad seizure which is often, he needs both us parents there. Hints to why we do landscaping Nyk loves the noises of outdoors, so he comes with us from time to time. To listen absorb nature, and the fresh air. Randy and I know that there is only so much time left with our son. We have a lot more of Dr. appointments coming our way for Nyk. Money is starting to become a huge factor seeing how we can't work all the time, keep with ongoing bills, and the trips to Boise, and Utah. We also need the funds to help to start the savings for his funeral, and a small sensory area for Nyk which will help his learning, even after all the seizures and pain his learning still progressing and he is getting smarter everyday, because we finally got him from 200 seizures a day to maybe 2 a month of massive grandmals, and absent seizures. They are less but his seizures are harsher when they hit him. So, if you could find the kindness in your heart to help us give Nyk the best life he can have while he is here, please donate today and share all the proceeds will go to helping our sweet boy and his funeral. Nyk was granted a wish from the make a wish foundation. We were able to purchase him a new bed, recliners, and a portable hottub for comfort. I will post updates accordingly. Thanks so much for your time reading our story. God Bless. Dezi (Nyks mom) please please find it in your heart to share and donate.