Lilly's Heroes

$23,199 of $35,129 goal

Raised by 89 people in 43 months
Jenny Nolan
on behalf of Emily Clough
 MONTCLAIR, NJ
My name is Jenny Nolan. My family is currently staying at the Ronald McDonald House in Wilmington, Delaware while our son/brother is in the hospital.

During our stay, we met Emily and Lilly. This is their story:

Emily and Lilly arrived at the Ronald McDonald House on the exact same day as our family (Dec. 19th). We traveled 130 miles, and they traveled 8,000 miles. They flew in from Uganda, Africa.

When Emily was 19 years old, she abandoned all of her material possessions, left all of her friends and family in South Carolina, and moved to Uganda. She became a foster mom through the Ugandan government and started a baby home. She is currently mom to 6 children, has legally adopted 1 of them (Lilly), and is in the process of legally adopting another. 

Emily is the hands and feet of Jesus to her children and she would do anything for them. She is currently in the middle of a fight for her daughter's life.

Lilly came to her as an infant. Just after Lilly's 1st birthday she was diagnosed with cancer. They were unable to receive treatment in Uganda and traveled to Kenya. Kenya then referred them to the U.S. because Lilly needs a bone marrow transplant.


It wasn't easy, but after months of fighting, they made it to the United States. God led them to Nemours Alfred I. DuPont Hospital for Children in Wilmington, Delaware. They are now in the process of going through preliminary testing for a bone marrow transplant.

Lilly's doctors are currently in the process of confirming the type of cancer that Lillly has (Myelodysplastic Syndrome). Lilly also has a seizure disorder that has not yet been diagnosed. In addition, they very recently learned that Lilly needs her tonsils and adenoids out ASAP. This will be happening as early as next week. She has severe sleep apnea. Basically, Lilly has a lot going on medically, and the doctors are trying to figure things out.

Emily and Lilly have hit a wall, and now they are reaching out for help. They are desperate.

Lilly is not a U.S. citizen. She is here on humanitarian parole. Although Lilly is Emily's legal child in Uganda, Emily is not legally old enough to re-adopt Lilly in the U.S. Therefore, Lilly is ineligible for insurance and any government assistance. They are paying CASH for all of Lilly's medical treatments.

The Children's hospital is helping immensely. They have a wonderful international program and they helped get the documentation that Lilly needed for a visa. The hospital is also giving them a discount and a payment plan.

But obviously, it is still incredibly expensive. Emily is paying out of pocket for all of Lilly's medications. She is paying out of pocket for anesthesia, operating room expenses, physician expenses, inpatient stays, tests, MRI's, etc. Even with a discount, the expenses for Lilly's medical treatments are going to total hundreds of thousands of dollars.

Without treatment, Lilly will die.

Many people have played a role in getting Lilly to the U.S. for treatment, but now, Emily and Lilly need more help.

Paying cash for Lilly's medical expenses is crazy. It is overwhelming. It seems impossible.

With God, ALL things are possible (Matthew 19:26)..

Please help us share Lilly's story. This needs to go viral and/or national. If anyone has connections to help us share Lilly's story with the world, please let us know! All of the money raised will go toward medical expenses for Lilly. 

You can follow Lilly's journey here:
https://www.facebook.com/Lillys-Heroes-506743302807671/?fref=ts

This treatment is Lilly's chance at life. Please join Emily and Lilly in this fight.

Thank you from the bottom of our hearts!





FAQ:

Why doesn't Lilly have insurance and/or government assistance?

Lilly is not a U.S. citizen. She is here on humanitarian parole. Although Lilly has legally been adopted by Emily in Uganda, the U.S. law states that she needs to be re-adopted in the U.S. in order to become a citizen. Emily will not be old enough to re-adopt Lilly in the U.S. for another two years. 

Why can't Lilly get free treatment at Shriners or St. Jude's Children's Research Hospital?

Shriners only provides care for orthopedics, burns, spinal cord injuries, and cleft lip and palate repair.

St. Jude's only does clinical trials, and there are currently no clinical trials for Lilly's type of cancer. 

Why was Lilly taken to Nemours Alfred I. DuPont Hospital for Children in Wilmington, Delaware?

They have a wonderful international program. The hospital helped Emily get the documentation that she needed for Lilly's visa. They are also giving giving a discount and payment plan.

When I donate, where does my money go?

This gofundme site is linked directly to Emily's (Lilly's mom) bank account. It is not passing through anyone else's hands. :)
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Please join us this Giving Tuesday and be a part of Lilly's Village as we make our final push to get all of Lilly's paperwork complete so she can get insurance. It has been such a long journey and you have brought us so so far.

Lilly's adoption was finalized in the US this past August (YAY!!!!) which was the biggest hurdle in getting her the medical insurance she so desperately needs! Her family has some final cost associated with getting everything they need switched over and all of the documents required to do that. Lilly's mom is a single mom working full time, that alone is hard enough. Add to that being a parent of a chronically critically ill child who doesn't have insurance it is nearly impossible. This is why we are asking for your help one last time. Once we complete this Lilly will have Citizenship and INSURANCE!!!!!! It is so exciting to be this close! This would mean Lilly can see ALL of the specialist she has been needing to see for years!

Currently Lilly is under the care of several specialist including oncology and immunology along with her regular doctors. Paying out of pocket for all of this is impossible, this is why it is so so critical to get Lilly insurance.

Lilly's family is so grateful for all of the love and support you have given over the past few years. It's true what they say, it does take a village and you have been the best village ever. This is our final fundraiser that will be done for Lilly because once we do this we are finally completely and truly DONE!!

Please help us hit our FINAL goal! We need to raise a final $12,000 to cover the LAST cost of getting Lilly insurance and citizenship. We never imagined it would take this long or cost this much, but not once have we ever come up short.

Please if you have any questions just reach out and ask!

This is IT! We CAN do this! We have come so far because of you!

Thank you in advanced for your generosity! Thank you for being Lilly's Village! Thank you for being Lilly's Hero!
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18 months, 3 countries, 2 misdiagnosis, a million test, questions, and what ifs. This little miracle girl has confused some of the best and it feels like in some ways we have more questions than we started with.

We got some great news back from Duke regarding some of Lilly’s results. Her tcell counts have gone up! This has me thrilled beyond belief and is such a sign of hope for my sweet girl! We will continue retesting and watching to be sure they are going in he right direction.

However the results of Lilly’s genetic testing showed some abnormalities. The gene variant Lilly has has never been reported before, so we have run into a bit of a tight spot. We are going to be seeing a geneticist to see if there are any more answers we can find or anything we can do for Lilly. We will never give up!

Friends I know we have asked a million times but will you please stand with us in prayer for answer, for hope and for complete healing for precious little Lilly.

Thank you will never be enough for all of your prayers, kinds words, and support during this insane year and a half. We are forever grateful
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A $14,000 donation just received!

Yesterday afternoon I shared that we once again had a massive hurdle to jump. We needed to raise $14,000 in over the next few days. I am still in a state of shock but am beyond thrilled to announce that because of miracles of kindness and a Father who’s love is beyond measure that hurdle was demolished in less than 6 hours.

We serve an incredibly faithful God, a God that loves my sweet Lilly more than I can imagine. And because of His goodness, faithfulness and the power He has to work in our lives, we went to bed last night with hearts full of hope for the beautiful future Lilly will have.


With the the incredible generosity bestowed upon our family, my simple thank you never seems enough. Your support continues to be greatly appreciated as upcoming medical expenses continue to present challenges, but every time God shows us the way. Because of generosity, prayers, and shares we will look forward to a bright tomorrow for Lilly with hope! Thank you!
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A little less than a year ago we got some of the best news ever! We got the news that we were going be able to get Lilly’s visa to travel to the US to the doctors she so desperately needs. The only thing standing in our way was a $20,000 hurdle. Through friends, family, and strangers this hurdle was destroyed in less that 4 days. The thankfulness I feel toward each person who shared her story and gave to her cause is beyond words.

Last year you were fighting with us to get Lilly to the US, this year we are asking you to join us as we fight to KEEP her here. It is time to renew Lilly’s visa and in order to do this we must once again prove to immigration that we can cover the medical treatment Lilly STILL needs. We are in the process of getting Lilly citizenship which will also give her medical insurance! But we can NOT let her visa expire while we are in this process.

In order to submit all documents needed in time we once again are embarking on another 5 day LIFE SAVING campaign. In order to renew Lilly’s visa, cover some of her medical cost, and continue the citizenship process we need $14,000. We must hit the goal shown here by this Friday (Note that the funds already raised here have been used to cover some of the additional unexpected medical treatment and testing.)

My DESPERATE CALL TO ACTION TO YOU, as a Mother, is please….if you were going to give please do NOW, and please tell your closest friends about Lilly and this cause. Lilly’s life depends on the medical care she is able to access here in the US. We have come so far but we still have a long way to go.

Thank you for helping me save my beautiful little daughter. Lilly’s life matters and we will once again have YOU to thank for saving her!

Today we embark on our second URGENT 5 day life-saving campaign. Please share this with EVERYONE you know! Are you with us? Together WE CAN DO IT! Please check back often this week on our progress.
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$23,199 of $35,129 goal

Raised by 89 people in 43 months
Created January 21, 2016
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SK
$20
Shirley Kates
21 months ago
JY
$50
Janie Yoder
21 months ago
GS
$500
GEORGE SENSOR
33 months ago
SC
$25
Sarah Cowan
36 months ago
1
1
RT
$20
Raquel Torres
36 months ago
1
1

Sending a big hug!!!

$14,000
Andrew Farland
36 months ago
$100
Janie Yoder
36 months ago
1
1
$50
Karri Misky
36 months ago
1
1

So sorry. You have all been through so much. God bless you!

TP
$50
Tracey Proctor
37 months ago
$500
Andrew Farland
37 months ago
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