Meg’s beautiful face!
Fundraising campaign by
Tammy Hall Johnson
-
US$8,689.82Donated So Far
GoGetFunding has been requested or required to stop this campaign.
Help this ongoing fundraising campaign by making a donation and spreading the word.Meg's beautiful face!
Imagine that everywhere you go someone stares, or even has to ask "what is on your babies face?" after you briefly explain they say "oh, she is still beautiful".
How can I explain how truly beautiful she is? How can they know the suffering she has been through, that my family has been through? I don't understand how a child living with poking, prodding, surgeries and tests can be so loving, happy, and radiate joy to everyone she sees.
Meg's life so far..
Meg was born with a large mass on her right cheek that made her right eye a small slit she could not see through.
At 1 day old Meg was moved immediately out of the birth hospital and sent to Primary Children's Hospital in Salt Lake City. The next couple of days were spent seeing doctors and having tests: MRI,CT scan, Echocardiogram, blood work, etc... They found she has 2 masses, one on her upper right cheek, and the other in her eye orbit. She was started on steroids to try to shrink the masses, as they told us that she might be blind within a month or two if a solution could not be found.
They still were not sure what the growths were, so at 1 month old she had a biopsy, and 3 months old surgery was required to collect more tissue to study. Shortly after that we were told Meg has a lymphatic malformation (LM) on her right cheek and hemangioma in the eye orbit. As the doctors have piled up, we have been given a constant stream of what each thinks the problem is, and what possibly could be done to help.
LM's are a cluster of lymph vessels (similar to blood vessels) that twisted and abnormally formed. That means they hold infection since that is the lymph systems job to remove the toxins from our body. Also that LM's can grow as she grows. Hemangiomas are more benign, but are also items that cannot be controlled.
For a while it changed little, but now continues to grow and block her vision, and has required constant visits to speacialists. Her eyes are now growing in a manner so that they will not be able to be balanced or level. The most recent information from a second MRI is that both masses have grown. That means both are LM's, not hemangioma.
We recently were able to attend a conference in California and were able to meet briefly with the best specialists in the field, and Meg caused quite a stir. Even they could not agree on the causes and treatments, so we have continued checking, testing, and praying for Meg. The one thing that has been made clear is that the growth she has on her cheek must be surgically "debulked" as they call it. One of the specialists has been in constant touch, and has given us hope for what can be done. So, at so many risks in so many ways, we must take Meg to New York City, the only place the specialist can do surgery. Our insurance will cover only a small part, but we must get this done!
What can we and you do?
Meg is having surgery and will be receiving her care far away from home. After researching and finding not all doctors know how to treat lymphatic malformations, your help would give us the chance to have the best possible care for Meg.
Will you help us get the funds to follow through with all that the doctor recommends? The opportunity this doctor offers is to have a better quality of life for my beautiful daughter. Please share and help our baby. Thank you for your support!
Organizer
- Tammy Hall Johnson
- Salt Lake City, US
Donors
- Charmaine Loftin
- Donated on Jun 26, 2014
- Tyler Eborn
- Donated on Jun 06, 2014
- Reichmann Family
- Donated on Mar 08, 2014
Surgery was a success!
Update posted by Tammy Hall Johnson at 07:50 pmWe made it through surgery. Our brave little girl just sat completely still one week after surgery to get her stitches and drain removed. Since then we had one more trip to New York for a follow up procedure. We must do one more trip and then the MRI at. . . . .
Let's try it again!
Update posted by Tammy Hall Johnson at 06:57 pmWe are all set for surgery again in March. Arrangements are made and we are praying and crossing our fingers that no more complications come our way! Thank you for your love and support!
The First New York trip
Update posted by Tammy Hall Johnson at 11:30 amWe made our trip to New York and........ travel made Meg tired (lethargic), her cough got worse, her temp was 99.8, so the anesthesiologist said NO surgery. The doctor discussed it with the anesthesiologist to see if we waited a couple hours, or days, if she would look over Meg. . . . .
What a great world we live in...
Update posted by Tammy Hall Johnson at 01:42 amYou have all helped life feel so much lighter. My husband said it best. "I am a very proud and stubborn man. I have had the hardest time with all the support and love being given to Meg and our family. I am not worthy, but Meg is. My emotions
Donors & Comments
- Charmaine Loftin
- Donated on Jun 26, 2014
- Tyler Eborn
- Donated on Jun 06, 2014
- Reichmann Family
- Donated on Mar 08, 2014
- Ken & Cindy Vance
- Donated on Mar 02, 2014
Mike & Tammy, We are praying for you, Meg and your family. Always have hope and remember your many blessings. Ken
- Guest
- Donated on Jan 31, 2014
You and your family are in my thoughts and prayers. A friend.
- Sharleen Mackay
- Donated on Jan 29, 2014
- Guest
- Donated on Jan 28, 2014
- Lilian
- Donated on Jan 27, 2014
Please, let's help this sweet little angel.
- Kasee
- Donated on Jan 23, 2014
Meg is beautiful! We will keep her in our thoughts and prayers and pray that the surgery is performed and you see a good result as well as get some answeres.
- Guest
- Donated on Jan 22, 2014