NoahDavid's Journey

THE PURPOSE OF THIS SITE IS TO PROMOTE AWARENESS OF LYMPHATIC MALFORMATIONS AND THE AUTOINFLAMMATORY DISEASE, TRAPS. THIS SITE WAS BUILT TO HELP PROVIDE INFORMATION AND SUPPORT FOR THOSE DIAGNOSED WITH LYMPHATIC MALFORMATIONS AND TRAPS AND THEIR CARETAKERS...

THIS IS NOAH'S STORY.

Then he said to them, “Whoever welcomes this little child in my name welcomes me; and whoever welcomes me welcomes the one who sent me. For he who is least among you all–he is the greatest.” Luke 9:48

WE GOT NOAH INTO THE NATIONAL INSTITUTE OF HEALTH IN MARYLAND FINALLY! PLEASE HELP US RAISE MONEY TO HELP COVER THE COSTS OF THE TRIP! HIS APPOINTMENT IS ON NOVEMBER 17TH! THANKS AND GOD BLESS!

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Noah is 3 years old and has a lymphatic malformation (also known as cystic hygroma) in his cheeks, tongue, palate, floor of mouth, lips, and upper neck. Lymphatic malformations fill up with lymph fluid and cause swelling in the areas that they are located. This causes Noah to have eating problems, makes his mouth and lips sensitive to bleeding, and can cause airway distress. Noah has also been diagnosed with an autoinflammatory disease called TRAPS (TNF Receptor Associated Periodic Syndrome). TRAPS is an autoinflammatory disorder resulting from mutations in TNFRSF1A, the gene that encodes the 55 kDa receptor for TNF. Clinically, patients present with recurring inflammatory attacks consisting of high fever, rash, conjunctivitis (swelling around the eyes), abdominal pain, headaches, nausea, and myalgia (muscle pain) that are often severely disabling. He has seen a multitude of different specialists in regards to his condition and is continues to be seen in St. Louis, MO.

IMPORTANT NEWS ON RARE DISEASES!!!!

Nino's Act is bill that will help families with rare diseases pay for experimental medical treatments. Senators Arlen Specter and Bob Casey, Jr. introduced the bill last year. On Tuesday, February 10, 2009, they reintroduced it. It ihas been passed by the Senate Finance Committee! Now it is being reviewed by the House Energy and Commerce Committe, one step closer to passing. Please read the following article concerning it and write to your senators and congressmen in support of the bill!! There is a form letter listed below that you can fill out and send also.

Mother Fights to Pass Nino's Act-Fox 43 News
S. 2629:Nino's Act-summary and full text of the bill
S. 406: Nino's Act-this is the revised bill that passed theSenate Finance Committee
H.R. 1421: Nino's Act-this is the revised bill that is currently being reviewed by the House Energy and Commerce Committee
Form Letter to send to Senators and Congressmen
Senator's Contact Information By State
House of Representatives Contact Information By State or Zip Code
Sign the Petition on Facebook

Thank you for all of your help and God bless.**

An Overview of Cystic Hygroma

Cystic hygroma is a non-curable disease. Noah will have to manage this disease for the rest of his life. It is unique to every person that has it. Each child that has cystic hygroma is born with it because their lymphatic system did not properly develop around 4-6 weeks gestation. Noah will always have the cystic hygroma that he has now, and it cannot spread, but it is only detectable once the tissue begins to fill up with fluid. It is very possible that he has it in other places that have not shown up in the MRI. There are 2 types of cystic hygroma-microcystic and macrocystic. We have been told that Noah's is mostly microcystic which is harder to treat. The macrocystic type can be treated with sclerotherapy, which are injections into the cyst area. The microcystic type can be treated with laser surgery or regular surgery. In both of these cases, it takes multiple treatments to be effective. Cystic hygroma can also be treated with regular surgery, but is only effective with total excision of the cyst. In most cases, people with cystic hygroma, go through these procedures, and the cystic hygroma reappears within a few years. Because cystic hygroma is rare, it is hard to find doctors who are qualified and experienced enough to treat it. In any case, to treat it could mean many procedures and multiple doctor and hospital visits throughout his life. It could cause his jaw bone to be deformed because of the swelling in the mouth and could also possibly affect his hearing, sight, speech, eating and breathing in the future. This disease will continue to make an impact on his quality of life as he gets older and has more interaction with the outside world.

An Overview of TRAPS

TRAPS (Tumor Necrosis Factor Recptor-1 Associated Periodic Syndrome) is a very rare autoinflammatory disease. TRAPS is caused by a genetic mutation that is hereditary. Although, Noah has had TRAPS since birth, he was only recently diagnosed. Because the sypmtoms of the disease are very general, it is hard to diagnose. The only way to cofirm diagnosis of TRAPS is with genetic testing. Because TRAPS is a newly discovered disease, there is not a lot of available information about it. Case studies on the disease are rare. There is no cure for TRAPS. TRAPS causes Noah to have high fevers, joint pain, abdominal pain, headaches, and pain in his extremities. The symptoms can come on at any time and stay for period of days or hours. His fevers most generally come on in the middle of the night, usually with him waking up with a fever between 104-105 degrees, sometimes accopmpanied by vomiting, chills, and pain. Because Noah is just now learning to talk and communicate, the extent and effect that TRAPS has on him is not fully known yet.

NoahDavid's Benefit Fund

We are currently raising money to help pay for Noah's medical care and expenses. We will be making a trip out to Maryland in Nov. 2009 for an appointment at the National Institute of Health. If you would like to make a donation, please make the check out to NoahDavid Pross Benefit Fund and send it to:

US Bank

Attn: NoahDavid Pross Benefit Fund

P.O. Box 309

Kirksville, MO 63501

or you can make a donation online through Paypal by clicking the box below