A Service Dog for Lily

For those who haven't met Lily, she is a strong, vivacious, beautiful child who has never known the meaning of giving up. Her first medical crisis happened when she was only 2 years old and she has dealt with more IVs, blood draws, finger sticks, appointments and hospitalizations than any one person should have to deal with. It took six and a half years to receive a diagnosis and even with that, there are still many unknowns. What we do know is that she has a very rare genetic syndrome called ADNP syndrome and a Mitochondrial Disease. Our biggest struggle is that she builds up ketones and if not caught early enough, she ends up in metabolic acidosis. To monitor her ketones we rely on expensive finger sticks, just like someone with diabetes checks their insulin. Lily also has nocturnal epilepsy. We used to monitor night time seizures with a camera, but as she gets older, the camera method doesn't give her the privacy she needs. For the past year we have worked on raising funds for a service dog for Lily from Dulebohn Dog Training. Lily's dog will give her back some of her independence by having a dog that is trained to detect ketones before they get to a dangerous level and who is trained in seizure detection and can alert us while maintaining Lily's privacy. Her dog will also be trained for mobility assistance to help with balance and retrieval on days when Lily's energy is depleted. We are down to the final fundraising and I have to pay the balance by Oct 23rd. We will be going to training in November. All money raised will go to Dulebohn Dog Training and I will be happy to provide receipts or provide their contact information if you chose to donate to them directly. This is our only fundraiser.