Help Out Landon, A Baby And His Family, Who Really Need Your Help
This is Landon Weatherby.
He is a very sweet and adorable little boy and is loved very much by his family.
Landon was born healthy on May 30, 2007 and in November of 2007, he was diagnosed with a mitochondrial disease called Leigh’s Disease which is a degenerative disease of the central nervous system. There is no treatment or cure for this terrible disease.
At two months old, little Landon stopped gaining weight and had difficulties eating. When his eating stopped all together at four months old, he ended up at Children’s Hospital.
Landon spent a month at Children’s and while there, became very weak and he lost all of the skills he had learned in his short little life.
His doctors ordered an MRI and it showed lesions in little Landon’s brain stem and that is when they diagnosed him with Leigh’s Disease. Landon is home now and in the care of his loving family and hospice. He receives all of his nutrition via TPN. (TPN stands for Total Parenteral Nutrition and is a complete form of nutrition that is administered through an intravenous infusion).
As you can imagine, the medical bills Landon’s family has accumulated is exorbitant! Financial and emotional tolls on a family undergoing a major medical experience such as this, can be very trying.
The waitstaff at the Estes Park Brewery have very generously volunteered to donate a portion of their tips this weekend to give to this very deserving family and the Brewery will match the amount collected and donate that as well.
What is Leigh’s Disease?
Leigh’s disease is a rare inherited neurometabolic disorder characterized by degeneration of the central nervous system. Symptoms of Leigh’s disease usually begin between the ages of three months to two years and progress rapidly. In most children, the first signs may be poor sucking ability and loss of head control and motor skills. These symptoms may be accompanied by loss of appetite, vomiting, irritability, continuous crying, and seizures. As the disorder progresses, symptoms may also include generalized weakness and lack of muscle tone which can lead to impairment of respiratory and kidney function. Heart problems may also occur.
Is there any treatment?
The most common treatment for Leigh’s disease is thiamine or Vitamin B1. Oral sodium bicarbonate or sodium citrate may also be prescribed to manage lactic acidosis.
What is the prognosis?
The prognosis for individuals with Leigh’s disease is poor. Individuals who lack mitochondrial complex IV activity and those with pyruvate dehydrogenase deficiency tend to have the worst prognosis and die within a few years. Those with partial deficiencies have a better prognosis, and may live to be six or seven years of age. Some children have survived to their mid-teenage years.
What research is being done?
There is a broad range of basic and clinical research being performed on neurogenetic disorders such as Leigh’s disease. The goal of this research is to understand what causes these disorders and then to apply these findings to new ways to diagnose, treat, and prevent them.
Please stop by the Estes Park Brewery this weekend and enjoy a nice lunch, knowing you are helping out a very loving family in need.