I am home today with my 2 little boys.  My youngest is celebrating his 2nd birthday.  They are healthy and happy.  Some kids aren’t this lucky 🙁 

(taken from my friends blog… ( http://www.uniquelyyouphoto.com/blog/ )

Imagine having a beautiful child.
Imagine finding out your beautiful child won’t survive past two years old.
Imagine having ONE wish for your child.
Imagine everyone banding together to make the wish a reality.

This is the story of Lilie’s family, and this is me (and hopefully all of you), committing myself to find a way to make this happen! Lilie is terminally ill. She has been diagnosed with GM1 Gangliosidosis. It is a rare, incurable lysosomal storage disease (enzyme deficiency) that will ultimately take her life by what research shows. . . by the age of two. She will continue to degenerate, go blind, have seizures, and eventually lose all ability to move and succumb to this disease. She is all but blind and her mom (Jen) is spending her last days enjoying what life is left in her daughter.

All Jen wants to do is take her daughter to the Ocean before she dies and Make a Wish will not grant them the wish because she is under two and they believe that Lilie will not get any benefit from it that it would only benefit the FAMILY… Jen is devastated.

Visit their Caring Bridge page here: http://www.caringbridge.org/visit/lilieclark

I am part of a wonderful group of photographers from around the country that are joining together to make a difference. We would love to be able to get them to Florida. If we can get them to Florida (there are 6 in their family), they can stay with family…but with tons of medical expenses, right now it just isn’t possible.

So I’m asking for your guys’ help….anything that you could donate to this fabulous cause….$5, $20, $500…ANYTHING.

There is a Paypal account for the donations. If you are willing to help out, please go to Paypal and send funds to the following address sulrich@neb.rr.com

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Finally– meet Baby Raegan and read her story here:  http://www.caringbridge.org/visit/babyraegan

Raegan is a miracle baby.  Due to a traumatic birth, she went from a perfectly healthy baby– to a very sick baby.  She wasn’t expected to survive past the first week but she DID and now is 9 months old.  Her kidneys were so damaged that they are unable to function.  She is in desperate need of a kidney donor.  If you or ANYONE you know has type O blood, PLEASE consider being tested.  Just think if this was your child and you had to hope that a stranger could save her life.  I would do it if I could.  Here is the letter from her family that was posted on the journal of her caringbridge site…

Below is the letter that we are mailing, emailing, etc to everyone we know in an effort to find Raegan a new donor. I hope that you will take the time to read it. I just took a minute to update Raegan’s pictures and also post a quick video of our giggley girl. It should warm any heart.

http://www.onetruemedia.com/otm_site/view_shared?p=511b7a786e15e9b7c2b72f&skin_id=601&utm_source=otm&utm_medium=email

This letter is being sent on behalf of our daughter, Raegan Milan and on behalf of our entire family with regards to Raegan’s need for a kidney transplant.

Raegan was born on January 29, 2007 in Raleigh, North Carolina. Due to severe oxygen deprivation at birth Raegan’s kidneys lost their ability to function. Raegan began receiving peritoneal dialysis in August of 2007. Due to complications with this form of dialysis we were forced to pack up our lives and transfer Raegan to the University of Minnesota Children’s Hospital. This hospital is one of the few hospitals in the country that can do hemodialysis on babies and it also has one of the best transplant programs in the world. We moved to Minnesota the week before Christmas of 2007. Raegan had a hemodialysis catheter placed within a couple of weeks and has been receiving hemodialysis five days a week for four hours a day. 

Since beginning hemodialysis Raegan’s health and strength have improved exponentially. She is growing, eating, “talking”, rolling and all around developing although she remains severely delayed. Her health finally improved enough to allow us to take her “home” with us for the first time since she was born. We are currently living in a small rental apartment in Minneapolis and really enjoying our time together as a family. With her health improving we felt like we were finally getting close to a transplant. I (her mother) had planned to be Raegan’s donor and we were quickly moving forward with the testing. On February 18 we received the devastating news that I cannot donate to Raegan because of a large number of kidney stones in my own kidneys. Raegan’s father has a different blood type so he is also not able to donate. 

Raegan urgently needs to locate a living kidney donor. Being in end stage renal failure severely delays Raegan’s ability to develop and hit milestones that are so important to her future. She is dependent on the function of a catheter that was placed in her chest. We constantly worry about it getting tugged on, infected or losing function. The hospitals local to our home do not do hemodialysis on babies her size so we are living 2000 miles from home until she can be transplanted.

We do not wish to put pressure on anyone to make such a donation or to personally respond to this request. We DO want to make the need known to as many people as possible in the hope that someone will feel a special call to help. Please spread the word and pass this on to your friends and family. If there is more than one potential donor who responds, either directly to ourselves or to Raegan’s transplant coordinator, the hospital will do tests on each of them in an effort to find the one who is most suitable. All cost associated with the evaluation process and the transplant surgery is covered with no cost to the donor. 

We know that what we are asking for is a huge commitment for anyone to undertake. We accept that many people would find it too much to even consider. If you should consider donating, we know that you would want to find out as much information as possible. Attached to this letter is a list of frequently asked questions and information on how to begin the donor evaluation process.

We deeply appreciate your consideration, your prayers and your good wishes in this matter of grave concern to Raegan and to our family.

Sincerely,

Michael and Layne Lombardi

Temporary Address:

3150 Excelsior Blvd.

THANK YOU ALL SO MUCH.  Please keep an eye out on the blog for other stories of Children and families that so desperately need help. 

Apt.

212

Minneapolis, Minnesota 55416

Permanent address:

5801 Raddington Street

Raleigh, North Carolina 27613

Layne’s Cell – (919) 280-6381 / Email: LayneT2@yahoo.com

Michael’s Cell – (919) 368-4340 / Email: mike.lombardi@andrew.com

Raegan’s website: www.caringbridge.org/visit/babyraegan

To begin the Donor Evaluation Process:

  1. Donors must be between the ages of 18 and 50 and have type “O” blood. (the positive or negative is not important)

  1. If you fit the above criteria please contact Cathy Garvey (Raegan’s transplant coordinator). Any information you discuss with her is strictly confidential. 

University of Minnesota Medical Center Transplant Center

Cathy Garvey, RN, BA, CCTC

Transplant Coordinator

(800) 328-5465 Ext. 582

Please email if you would like to view the FAQs

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There are SO many stories of families struggling with sick children.  I can’t even imagine what they go through on a daily basis and I am just happy to help in any way that I can.  Both of the above cases happen to be of families that are located here in Minnesota (at least for the time being).  PLEASE PLEASE help if you can!  Thank you all– and God bless!  Keep an eye out on the blog for the latest information on a project we are working on to help meet the needs of some of these special families!  🙂