Help Give Kalani a Chance for a Brighter Future

Monica Perce is organising this fundraiser.

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I put together this page to help our precious Kalani. Kalani is a joyful and energetic toddler with some major health challenges up ahead. When Kalani was 1 , she was diagnosed with an ultra-rare genetic condition called KMT2B Related Dystonia. There are currently under 100 people worldwide diagnosed. Her disease will get more and more progressive as she ages, and there is currently no cure.

As a baby, Kalani had extreme struggles with feeding and maintaining weight, sleep disturbances, and seizures. These led us to do genetic testing. Her condition is caused by a de novo mutation (not inherited) where a strand of RNA copied incorrectly (similar as to if you had all the letters to a word, but the word is scrambled). KMT2B related dystonia can cause dystonia, loss of mobility, seizures, failure to thrive, developmental delays, feeding difficulties, hearing difficulties, vision problems, etc.

A few months ago, Kalani started complaining of pain in one of her hands. Unfortunately, her dystonia has started progressing a few years earlier than expected and it now impacts all of her extremities. She often has painful episodes where her hands are clenched, her feet are curled in or where one leg gives out. She currently uses SMOs but was just reevaluated and is in need of AFO and well as hand splints for spasticity.

Another big area of concern is feeding/weight gain. At 3.5 years old, she is currently under the 1% percentile for weight. While she is hungry, she struggles to safely chew and swallow food without getting fatigued. Her doctors believe that similar to her extremities, her muscles may also be spasming in her throat. She is in need of feeding therapy and scheduled for a swallow study (where they will x-ray her throat while eating) later this year. She was receiving feeding therapy in Alta’s early intervention program but aged out when she turned 3.

Continued early intervention & therapies give Kalani a chance to live her best life. Regression is common with this disorder. By continued intervention, we have a chance of slowing down and hopefully greatly reducing skills being lost as she ages.

Kalani is currently being followed by doctors and specialists at Shriners, Sutter, and CCS Medical Therapy Unit. She also is currently with Alta after 3 on a provisional basis, this is due to the rarity of her diagnosis (while provisional, no disability medical, waivers or financial help for copays or medical equipment). They are set to evaluate Kalani for full scope Alta after 3, when she turns 5. We are working with our coordinator and praying that they evaluate her case sooner than that. In the meantime, we are struggling to keep up with copays to provide her with needed therapies, tests, and braces.

Funds received will first and foremost go towards current medical needs, such as medical equipment, the braces that she currently needs, cost of feeding therapy and her nutritional supplements. After that, funds will be used to pay down some of her medical debt and be put aside in an account for her continued & future medical expenses. With the nature of her disorder, she will need therapies and medical intervention her whole life.

We are so grateful for all of our friends and family who have stood with us and encouraged us over the past few years. Even if you can’t give, we ask that you will join us in prayer for our precious Kalani. The future is full of unknowns, but we know that God is holding her in his hands and he is walking with us through this difficult journey ahead.

Much Love ❤️