Auction Instructions

If you are experiencing any trouble posting your bid, you can also email your bid information to mommiesfundingresearch@yahoo.com and we will post your bid for you. Just make sure you tell us what item you are bidding on. The bidding will take place in the comments for each individual item. When you bid, please adhere to the following rules.

1. You must bid with a name and the dollar amount of your bid. First name is fine if you don't want to post your whole name for everyone to see. Every item has a minimum bid of $10.

2. You must post with an email address. If you don't want to post your personal email address, please create a yahoo, hotmail, etc. account for the purposes of this auction. You MUST use this email address for all auction communications, because the winning bidder will only be contacted at the winning email address. This is to ensure that the item goes to the person who bid on it.

3. Please do not bid on an item unless you are willing to follow through with your bid.

4. No bids will be counted after midnight - 11:59pm to be exact (eastern standard time) on July 7th. When the auction is over, please check to see if you have won an item. All comments posted after this time will be deleted.

Example of a bid:
Mary
$20
mary@emailaddress.com

5. Any bid missing any of the above information will not count and will be deleted.

6. Your winning bid includes shipping within the United States ONLY. If you live in another country, you may still participate, but be prepared to pay the difference in shipping costs.

Still have a question? Please do not ask questions in the comments sections. Anything other than a bid will be deleted. Please email us with any questions, comments, or concerns.

Detailed instructions on how to submit your donation and receive your item will be posted near the end of the auction, but here is a general overview of what will happen.

When the auction ends you will have 48 hours to follow through and make your donation in the amount of your winning bid. You will receive an email from mommiesfundingresearch@yahoo.com confirming that you have won, listing the winning bid, and including detailed instructions on how to pay for your item. You must follow the specific donation instructions for each charity so that we receive proof that you have paid. The person with the item will wait for confirmation of payment from us (NOT the winner) and at that point, the two of you can make shipping arrangements. More details will be included in your email, but here is a brief overview of what to expect:

SMA payments will be made online through the Families of SMA website. There is a page specifically set up for our auction. Click here to see the donation page. You may also make a monetary donation using this page if you wish to make a contribution without bidding in the auction. Thank you to everyone who donates!

MPS payments will be made by credit card through Clair. MPS Society sent her a credit card machine for the purposes of this auction. PayPal is also accepted, but please submit payment as personal so that Clair is not charged a PayPal fee. If you submit it as payment for goods, you will have to cover the PayPal fees before your item is sent.

Shipping is the responsibility of the person donating the item, EXCEPT in the situation where the winning bidder lives outside the United States. The winning bidder will have to make arrangements with the shipper to pay for the difference. Questions about shipping on a specific item? Ask us.

Sawyer's Story

Sawyer was born on 6/29/07 and diagnosed on 8/22/07 with Type I Spinal Muscular Atrophy (SMA). Type I SMA is also called Werdnig-Hoffmann Disease. SMA is the #1 genetic killer of children under age 2.

SMA is an autosomal recessive genetic disease. An individual with SMA has a missing or mutated gene (SMN1, or survival motor neuron 1) that produces a protein in the body called Survival Motor Neuron (SMN) protein. This protein deficiency has its most severe affect on motor neurons. Motor neurons are nerve cells in the spinal cord which send out nerve fibers to muscles throughout the body. Since SMN protein is critical to the survival and health of motor neurons, without this protein, nerve cells atrophy, shrink and eventually die, resulting in muscle weakness.

As a child with SMA grows, their bodies are doubly stressed, first by the decrease in motor neurons and then by the increased demands on the nerve and muscle cells as their bodies grow larger. The resulting muscle atrophy causes weakness that leads to loss of function; such as head control, leg and arm movement, swallowing, feeding, as well as additional compromise of the respiratory (breathing) system.

At the time of Sawyer's diagnosis we were told there was no treatment available and he would die before his 1st birthday. We refused to accept that in this day and age there was nothing to be done and Charles immediately searched for the latest techniques and research on this disease. Sadly, this is the reality for children facing this disease.

His efforts brought us to The University of Utah's Medical School and Dr. Kathryn Swoboda, a geneticist and researcher at Primary Children's Medical Center. After flying there to meet with Dr Swoboda, Sawyer was placed on medications (Valproic Acid & carnitine). The medications were not a cure, but were being given in the hope of improving the quality and length of his life. Sawyer was visited weekly by a nurse, physical therapist, and an occupational therapist. Sawyer required around the clock care. Our goal was to enjoy Sawyer's sweet smiles and laughs as much as we could every day. We wanted him to live comfortably and to feel well loved.

Despite his circumstances, Sawyer was a happy baby. He smiled constantly and loved attention! He was a true joy to be with! Sawyer went to heaven when he was 3 months old. He was in our arms, surrounded by love and passed peacefully into heaven. To learn more about Spinal Muscular Atrophy & the efforts to find a cure please visit the Families of SMA website.

There IS HOPE! Scientists feel they are very close to finding a cure!

Hannah's Story

Hannah was diagnosed with MPS Type I on June 30, 2008- one week before her first birthday.

MPS is an acronym for a rare genetic disorder called mucopolysaccharidosis. Hannah's body was lacking an enzyme necessary to break down molecules called glycosaminoglycans - long chains of sugar carbohydrates in each of our cells that help build bone, cartilage, tendons, corneas, skin and connective tissue. Over time, these glycosaminoglycans collect in the cells, blood and connective tissues. The result is permanent, progressive cellular damage which affects appearance, physical abilities, organ and system functioning, and mental development.

There is no cure for MPS although there are some treatments that are proving helpful, if successful. The first is enzyme replacement therapy (ERT), where a synthetic form of the missing enzyme is given through an IV weekly. It is helpful in the physical aspect of the disease, but doesn't cross the blood/brain barrier so it doesn't help with the neurological breakdown that occurs with the disease.

The second treatment is a stem cell transplant. Since the enzyme is produced in white blood cells, a transplant of healthy, enzyme producing stem cells will produce enzyme producing white blood cells, which do cross the blood/brain barrier. We made the choice for Hannah to start enzyme replacement therapy as soon as possible and start the process for transplant. Hannah responded almost immediately to the ERT, her liver started shrinking and her facial features became softer. A stem cell donor match was found very quickly and Hannah started chemotherapy to prepare her body for transplant on August 25, 2008 and transplant day was September 4, 2008. Hannah did not respond to the first transplant and it was deemed unsuccessful in early November.

We made the difficult choice, again, for another transplant. She started chemotherapy again on November 10th and transplanted on November 15. Just a few days later Hannah went into respiratory arrest and 5 weeks later she passed away. The strong drugs necessary to break down her immune system prior to transplant were just to much for her little body and we had to make the difficult decision to let her go on December 27, 2008. She fought harder than anyone I've ever seen, and harder than anyone should have to. She was surrounded by loved ones throughout her life and as she passed. We are grateful for the time we had with her, we just wish he had more.

For more information please check out www.mpssociety.org