Bob's granddaughter, Sierra Robbi Nolan is a beautiful little 2-year-old girl. This sweet baby was born with a host of medical challenges. Miller Dieker syndrome (MDS), Lissencephaly, Colpocephaly, Ventricular Septal Defect (VSD), Submucous Cleft Palate (SMCP), Gastro Esophageal Reflux, and developmental delays.
Her first 27 days of life were spent in the NICU. Since her NICU stay at Loma Linda, Sierra moved across the country to Pennsylvania. The next time she flew, it was in a helicopter as she was life flighted to another children's hospital. Emergency transport, hospital stays, surgeries, and daily treatments and therapies are a normal part of life for Sierra.
Since moving across the country, she has had some added diagnoses: Epilepsy, Lennox-Gastaut syndrome (LGS), Cortical Vision Impairment (CVI), she went from being fed through an ng feeding tube to a g-tube (nasal tube to a little button on her belly), has Central Sleep Apnea and experiences difficulty managing upper airway secretions therefore she utilizes BIPAP for sleep. Sierra is also catheterized several times a day as she has Neurogenic Bladder...
The list goes on, but Sierra took and continues to take these challenges in stride. She came into this world fighting and that is why she is still here today. She was not expected to live to see the age of 2 years old. But here she is.
While Sierra has a predicted shortened life expectancy, we have witnessed many children surpass their predicted life expectancy due to the quality of care they receive and their will to survive.
Sierra’s family focuses on quality of life rather than quantity of life. If Sierra maintains her quality of life, she will continue to fight to survive. When you look at Sierra, you see she is here because of the love and quality of care received. Sierra is loved by people throughout the world, and now by those that are with her in spirit. Her grandfather Bob and grandmother Robin as well as others.
Sierra’s days are filled with treatments, and therapies but they are also filled with love, happiness, giggles, and hugs. She loves to hear storybooks, watching cartoons with her cousins, playing with her toys and holding her stuffed animals.
There are many needs that children like Sierra have that are often not covered by insurance. You can help improve Sierra’s quality of life by donating today. We thank you for any consideration given to supporting Sierra' needs and individuals like her. You can donate directly to Sierra’s needs by donating on this specific page.
***Should you decide to mail a check, please note that the memo section must state for Sierra Nolan only.