Nikola’s favorite things in life are simple. The sound of his grandma singing to him, the feeling of the sun on his face, eating sweet ripe bananas, listening to his mama reading him stories, and going for daily walks in the fresh air with his daddy.
Soon, a terrible disease will cause him to lose the ability to eat by mouth, to smile and to laugh, to see, to hear, and to move his little body.
Our precious boy has been diagnosed with a rare terminal brain disease called Krabbe disease, a type of leukodystrophy. Krabbe is an inherited genetic disease. Children with this disease can’t create enough of a substance called galactosylceramidase, which is needed to make myelin. Myelin is the material your body uses to surround and protect nerve fibers. Without this protection, cells in the brain will die, and the nerves in the brain and other parts of the body will not work properly. There is currently no cure for Krabbe disease. Babies with this condition have a life expectancy of 13 months.
This news has been unbearable and impossible to fully comprehend. That is why I now ask for your help on behalf of my sister (Lana) and brother-in-law (Dragan).
Because there is no cure for Krabbe, children with the infantile onset receive only palliative care and supportive therapy.
To help keep Nikola comfortable, there are therapies and special equipment to ease his pain. Most of this is not covered by health insurance and is extremely costly. Additionally, there is only one physician in the U.S. that specializes in this rare disease. Dr. Maria Escolar (Director, Program for the Study of Neurodevelopment in Rare Disorders) is located in Pittsburg, PA. Anytime Nikola must be seen by her, Nikola’s parents have to travel from Virginia to Pennsylvania at their own cost (flights, hotel, car rental, etc.).
Our goal with this campaign is to help Nikola’s family obtain necessary medical equipment to ease complications and comorbidities associated with Krabbe disease. Our other mission is to bring awareness about this terrible disease. There are only 4 states in the country that test for Krabbe on the newborn screen at birth. If treated at birth, Krabbe victims can have a significantly better outcome and live a longer life. Any additional funds we raise from this campaign will be donated to Hunter’s Hope. Hunter’s Hope Foundation addresses the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies. This organization is pushing for legislation for testing as it could have saved Nikola’s life and the lives of many other babies with Krabbe Leukodystrophy. For more information, please visit https://www.huntershope.org/
Any funds that we raise for Nikola’s family will be used to purchase the following listed below:
1. Pulse-ox machine, oxygen machine and suction machine to help Nikola to avoid aspirations. This machine measures the amount of oxygen Nikola’s blood is carrying. http://www.clinicalguard.com/pediatric-pulse-oximeter-p-75.html
2. Medicine compounding (there are special pharmacies that “compound” or create the medicine in the only form Nikola can receive it in).
3. In-home therapies (OT, PT, etc.)
4. Adapted Therapeutic Stroller
5. Ankle Foot Orthoses
6. Bath Chair: Leckey: http://www.leckey.com/products/#bathing-and-toileting
7. Benik Splints: These are used to keep the flexibility in Nikola’s thumb, which are pulled into the fist: http://www.benik.com/peds/wrist/
8. Benik Vest: A vest that covers Nikola’s entire trunk and provides extra support for the back and abdomen: http://www.benik.com/peds/trunk/v-100
9. Special Car Seat: Britax Traveler Plus http://www.adaptivemall.com/brtrpl1.html
10. Jiggler: www.Abilitations.com
11. Knee Immobilizers: http://www.rcai.com/
12. Nuk Brush: Oral stimulation device http://www.beyondplay.com/ITEMS/T496.HTM
13. Percussor: For stimulation and relaxation of muscles.
14. Standers: Weight bearing activities strengthen bones and increase circulation.
15. Adapted Therapeutic Stroller http://www.southwestmedical.com/products/Hoggi-Bingo-Push-Chair-Stroller-Size-1-32667.html
and the Kid Kart http://www.usatechguide.org/itemreview.php?itemid=841
16. Suction Machines: These machines act as a vacuum with a small nozzle that can be inserted into Nikola’s mouth when he struggles to manage his saliva.
17. Thoracic Lumbo Sacral Orthosis to maintain proper spinal alignment.
18. Tumbleform: Adapted floor and feeder sitters with bases that allow for adjustment of incline http://www.adaptivemall.com/floorsitandf.html
19. Versaform: These pillows can be formed into whatever shape is needed to best support Nikola. http://www.pattersonmedical.com/app.aspx?cmd=get_subsections&id=100662
20. Z-vibe oral stimulation tool
22. Monthly costs of medications and supplements
23. Travel to/from Pittsburgh, as needed
24. Funeral costs
Any donation for Nikola's care or simply sharing this link for others to learn about this terrible disease is much appreciated.
To learn more about Krabbe and its devastating effects please visit: https://www.mayoclinic.org/diseases-conditions/krabbe-disease/symptoms-causes/syc-20374178
As you might imagine, Nikola’s diagnosis has been devastating for his parents and the day-to-day care for him is all consuming. As such, I will provide status updates on this page about how he is doing on their behalf. The next step for Nikola is surgery to insert a gastrostomy tube (G-Tube) along with a Nissen Fundoplication surgery. We anticipate this surgery in the next few weeks.