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This fundraiser ended on 07/31/11

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Spencer and Bryton need your help. They don't deserve to share in the pains of surgeries and hospital stays.Help them get the care they need

Spencer and Bryton Pratt are brothers that were born with a similar birth defect -- one that has a severe detrimental impact on both their health and their quality of living on a daily basis. The truly sad part is that our sons do not have to suffer this way – they just need medical help from a specialist. Help that is currently unavailable in our home state.

Spencer is a 6 year old boy who was born with an H-type tracheoesophageal fistula (TEF). A TEF is essentially, a point of fusion or connection between the trachea (windpipe) and esophagus (the tube that carries food from the mouth to the stomach). TEFs often lead to severe and/or life-threatening pulmonary complications, as food particles can enter the lungs and/or air can enter the stomach and intestines. Either event can be fatal to a child. Three out of the nine surgeries Spencer has had to date have been unsuccessful attempts to fix this misconnection. On March 9 of this year, Spencer was admitted to the hospital after suffering from chronic and severe respiratory infections that caused him to miss almost half of his Kindergarten school year. During the extensive testing that the doctors did to try and determine the cause of Spencer’s repeated infections, we discovered two things that rocked our world. Not only did the last attempted repair of Spencer’s TEF fail (a fact we had been unaware of until this point), the doctors found a second fistula about 10 cm down from the first.

The upshot is that now Spencer has TWO misconnections that need to be repaired in order to keep food and other fluids from destroying his lungs. He will also need to have a feeding tube placed in, until his esophagus heals from the surgery. There are no doctors in Texas that are qualified to do the complicated repair surgery that Spencer is now facing. Aside from the impact this is having on our son physically, there are now huge impacts on his education and his self-esteem. A few weeks ago, he came to me in tears and said, "Mommy I am not ever going to get better". These are not words one should ever have to hear from a 6 year-old. No child should be forced to live in continual fear of dying or of being sick indefinitely when something could be done to help them!!!

Bryton is Spencer’s 21 month old little brother. Like his older sibling, Bryton was born with a TEF, but with an additional twist. Along with TEF, Bryton was also born with esophageal atresia (EA) – a condition that occurs when the esophagus is disconnected in the middle, and the top part ends in a blind pouch (like a sock), while the bottom part of the esophagus is misconnected to the windpipe. The combination of EA/TEF that Bryton was born with occurs in about 1 out of 4,000 births – though most people remain unaware that this particular defect even exists until they are confronted with it.

In addition to having EA/TEF, Bryton is also developmentally delayed, and has had pneumonia since his first birthday. The doctors now suspect that Bryton may have a recurrent fistula at the initial repair site of his TEF. On top of everything else, he has right middle lobe syndrome (the middle lobe of his lung doesn't open like it should), and severe tracheomalacia. The latter is a condition that occurs when a section of missing cartilage in the windpipe (a result of the misconnected esophagus) causes the tissue in the trachea to compress or “pinch shut” when Bryton is coughing. The resulting “floppy airway” closes off his air supply and causes him to turn blue. It is tough to know at this point how much of Bryton’s developmental delays are the result of the recurrent illnesses/constant oxygen deprivation that he suffers with daily.

Like Spencer, Bryton needs several major and complicated surgeries to repair the defects he was born with. And like his big brother, Bryton is unable to get the care he needs here in Texas. There are simply no local doctors who specialize in the specific surgeries that both our sons need.

Spencer (despite everything he is going through) has a heart of gold and loves everything and everybody. He is a caring child, and would do anything to make someone else feel better if they were sad. Bryton is one of the most loving children that you could ever meet. We need your help to give these boys the life that they deserve. We have finally found a doctor at Children's Hospital Boston that specializes in EA/TEF corrective surgeries. He heads up the ONLY clinic in the entire nation that deals exclusively with the exact defects both of our sons were born with. Dr. Jennings has agreed to perform the extensive corrective surgeries (8 – 12 hour procedures) that both boys desperately need, and which the local doctors here lack the experience to provide.

Spencer's surgery is scheduled for June 2nd, and Bryton is scheduled for June 3rd. (see update) They are estimated to be in the hospital for at least 30 days. This is not the last of the medical procedures the boys will need. Bryton has a tethered spinal cord and will need surgery in the near future for this as well. Spencer has scoliosis and will need a series of procedures to help straighten his back. There is also concern that he may have Muscular Dystrophy.

My husband and I have three other children, and are severely cash-strapped as it is. Medicaid has agreed to pay for us to take the boys out of state for care, but they can’t cover any living expenses – and that includes what it would cost for me to stay in Boston with them for a month or more. Without help from friends and neighbors like you, we will not be able to afford to take the boys to Boston, because the expense of paying rent in two places for that long will bankrupt us. We are in desperate need of help with travel and other related expenses. Please help our boys get the medical care that they need. It is very hard for my husband and I to have to swallow our pride and appeal to the general public for financial assistance. … but if it was YOUR child’s life on the line, you would do anything – including begging total strangers for help. Any donation is welcome, and no amount is too small.

Mom (Amy Pratt) can be reached at 210-630-7978 or Less Than The Least Ministries who is trying to help support this family can be reached at 281-896-7311 (Jennifer Schnepp)

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