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Wow team, we are actually blown away. Thank you everyone, from the bottom of our hearts. We just wanted to provide some details about Lilahs condition. Phelan McDermid Syndrome is a Chromosome deletion on the 22nd chromosome on the 13th segment. Her deletion is approximately 1.7MB, Deletions range from 25KB up to 9MB. There is no cure for Lilahs condition and is managed with supportive care. There is a very strong possibility that she will never live independently and only 18% of people diagnosed have ever gained Speech, which is why moving is so important to us and accessing Daily speech therapy, we will also be learning sign language so Lilah has some form of communication.

More details on Lilahs condition as below:

Symptoms of Phelan-McDermid syndrome vary from person to person. Not all children will have every symptom. Common symptoms may include:

Neurological and neurodevelopmental problems, including:

• Developmental and speech delays

• Autism spectrum disorder

• Intellectual disability

• Behavioral problems

• Seizures

• Brain cysts

• Trouble sleeping

• Low muscle tone

• Regression

• Brain Cysts

Cardiac problems, including:

• Structural heart defects

Gastrointestinal problems, including:

• Constipation

• Gastroesophageal reflux

• Poor feeding

Kidney problems, including:

• Vesicoureteral reflux

• Hydronephrosis

• Renal cysts

• Renal hypoplasia or agenesis

Susceptibility to infections, including:

• Recurring ear infections

• Upper respiratory tract infections