FedEx Donates Private Jet So 2-Year-Old Can Get Liver Transplant

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Nicholas and Jesse Faris’ 2-year-old daughter Brooklyn has Alagille syndrome, and as a result of the rare genetic disorder, Brooklyn was experiencing liver failure and in dire need of a transplant.

After a year of waiting, the family, who live in Memphis, received the call they’d been waiting for: A liver was available in Chicago, reported WREG Memphis. The surgery had to be performed within 24 hours of the organ donation, but when a snow storm hit Chicago on Wednesday, more than 1,300 flights were cancelled, and the family was unable to book tickets.

The family posted messages on social media asking for help, and according to Fox 13 Memphis, FedEx stepped in. FedEx, based in Memphis, flew the Faris family to Chicago on one of the company’s private cargo planes, and then transported them to the hospital.

“When we learned of the extraordinary circumstances and extreme urgency of the situation with Brooklyn, we knew we had to do something,” Patrick Fitzgerald, Senior Vice President of Integrated Marketing and Communications at FedEx Services, told The Mighty. “Thankfully, we had the network and resources available to make it happen for this family in our hometown of Memphis. The entire FedEx family is pulling for a quick and full recovery for Brooklyn.”

The family expressed their gratitude in a post on their website, COTA For Brooklyn F, this morning:

The past 24 hours have been UNREAL. There are so many amazing, good, kind people in this world. Memphis has come together in the most amazing way for Brooklyn. Over 1,300 Chicago flights were canceled due to weather. Planes could not land… Except FedEx planes. So FedEx flew Brooklyn there — for FREE. Today we pray for a successful surgery. We pray for a rapid recovery. We pray for years of good health for Brooklyn. And we pray for comfort and grace to fall on the family that is mourning the loss of this brave person who has given sweet B the biggest gift.

Brooklyn went into surgery prep around 10 a.m. on Thursday, and by 1:30 p.m. the family revealed the medical team was in the process of taking out Brooklyn’s old liver. The family added on their Facebook page, “FedEx. You have outdone yourself,” and explained that they’ll now be able to use the funds they’ve raised for expenses “besides chartering an emergency flight at 1 a.m.”

*UPDATE**It’s GO TIME everyone! The Faris family just received the call. THE CALL. There is a liver waiting for Brooklyn in Chicago today. Prayers for the family’s travel are very appreciated! If you’ve already donated to COTA on behalf of Brooklyn—please consider giving a little more. If you’ve shared the link to the website and the video—PLEASE SHARE AGAIN! Memphis has been so incredibly generous to the Faris family and now the real need begins. Let’s see sweet Brooklyn all the way through! Today we pray for Brooklyn’s healing and we praise God for all He is doing! http://www.cotaforbrooklynf.com/

Posted by COTA For Brooklyn F on Wednesday, February 24, 2016

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What I’m Thinking When You Tell Your Kid Not to Stare at My Daughter in Her Wheelchair

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“Stop staring! It’s rude,” the embarrassed mom loudly whispers to her daughter before she drags her away from us. My daughter Campbell, who is in a wheelchair, is fortunately looking elsewhere at the time.

I just stand and watch the situation unfold and observe the child as she looks at her mom with a guilty face and then mutters, “I’m sorry,” before turning back once more to look at us.

Don’t be sorry,” I silently think to myself, “It’s OK to look. Once you get to know her, she’s not so different from you.”

I smile at her, and for a moment she returns the smile. There is a small connection forming.

“What’s wrong with her?” she asks, looking halfway between her mom and myself.

I want to answer her, “It’s OK to ask,” but I don’t get the chance.

Her mom averts her eyes from us and pulls her away even further, making it impossible for me to hear what she is saying.

Maybe she wants to know how old Campbell is or her favorite color.  Maybe she wants to know if she likes Taylor Swift or Selena Gomez.

I guess we will never know.

This isn’t an uncommon experience. Sometimes it might not be as obvious. It may just be the mom whose child is looking at Campbell in the waiting room at the pediatrician’s office, who smiles politely at us before she picks her up and moves across the room.

I smile back but silently think, “I wish you had stayed.”

Another missed opportunity.

In general, many of us are taught not to stare. Especially if it is at someone who appears “different.” We are told it is rude.

But are we really sending the right message?

As the mother of a child with a craniofacial condition who also happens to be in a wheelchair, I say “no.”

I think by telling our children not to look at people who seem “different” or to ask questions, we make those people stand out even more.

Children are naturally curious and ask questions. Let them. You may be surprised that most of the time, it might be a wonderful learning experience, maybe even making them a new friend.

Just recently, a spunky, blonde 8-year-old girl approached us at an archery tournament. We were standing in line at the concessions and she had been staring at us for a while before she started asking questions.

“Why is she in a wheelchair?”

I explained that Campbell can’t walk and has to use a wheelchair to move around. Then I showed her how the wheels on her chair light up, which she thought was super cool.

“Hey, look, my shoes light up, too!” she said excitedly as I smiled at the similarity.

“Are her legs broken? Because I broke mine last year and had to wear a cast. It was really hard to walk.”

I explained that her legs were not broken but she was born this way. And even though she can’t walk, she can get around with her wheelchair.

“That’s so cool. Can she go really fast like I do on my bike?”

I laughed a little before I told her how her brother enjoys pushing her fast, especially in the grocery store.

“Oh, I’m sorry,” she said with a look of pity on her face. I was a little confused before I realized what she was talking about.

She patted Campbell on the shoulder and said, “It’s OK. I’ve got a big brother, too. He drives me nuts!”

She laughed. And so did Campbell.

Then she asked if it was OK to push her as we made our way closer to the concession stand. I agreed while I listened to her ask Campbell, “Hey, do you like Taylor Swift? Because I love her.”

Campbell nodded her head excitedly, and I confirmed that yes, she does like Taylor Swift. They both smiled at each other as the little girl pulled out her phone and started playing “Shake It Off.”

I stood there for awhile watching these two little girls listen to song after song, smiling and laughing, the little girl pushing Campbell’s chair to light up the front wheels as her shoes did the same.

I was thankful she had taken the time to stop and ask questions about Campbell even if it started with a stare.

I smiled and brushed away a tear, silently thinking, “They really aren’t so different after all.”

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Michelle’s daughter, Campbell (left).

Follow this journey on Chasing the Cleavers.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Why I’m Thanking the Woman Who Chased After Me When I Used Handicapped Parking

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Dear Random Woman,

Thanks so much for chasing me down to my salon after I parked and chiding me for parking in a space that “actual handicap people could use” — all while I was getting my eyebrows done.

Thanks for giving me the perfect opportunity to show you my heart monitor and explain my heart condition and why my doctor prescribed me a handicapped placard so I don’t pass out. Yet you still tried to argue after this because I “look healthy.”

Thanks for giving me an opportunity to show grace and grow in patience, but also speak truth and stand up for myself.

But overall, thank you for giving me a reason to speak out.

I’m sick of being quiet about this. You actually said what I believe a lot of people are silently thinking when I’m in a wheelchair at the airport, when I have to lie down when I don’t feel well and when I have to use handicapped parking so I can actually go to church. The only thing that can match how poor I feel on a regular basis is the feeling of dozens of people staring at you, wondering if you are “faking it.”

Thanks for also giving me the opportunity to share why judging people with disability stickers or people in wheelchairs who “look healthy” is not OK. Just because I don’t have a cane or am not “obviously” disabled doesn’t mean I’m any less so.

Our jobs aren’t to judge whether someone has a legitimate illness or disability — that’s a doctor’s job. So everyone, let’s be kind to each other. The world will be a much better place for it.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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15 Truths Parents With Chronic Illnesses Wish Others Understood

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Parenting can be challenging enough. Add the demands of managing a chronic illness, and life is suddenly filled with a new set of difficulties others may not deal with — or understand.

To illuminate what life is really like “behind the scenes” for parents with chronic illness, we asked our Mighty parent community with a chronic illness to reveal what they wish others knew about their lives. Above all, they ask for less judgment of their parenting and more compassion for the obstacles they face every day.

Here’s what they told us:

1. “My kids are not going to suffer from having a parent with a chronic illness. They are going to be more compassionate and thoughtful people.” — Chronic Mom

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2. “When you see me being involved in my children’s lives, don’t ever doubt for a moment how much strength and determination it takes to get up and go every single day. Outsiders may only ever see a smiling face, but don’t doubt that the majority of the time I have to take life one hour at a time. Every hour of every day is a struggle; you do not know my story or how much suffering is done behind closed doors, or how carefully I have to manage my days to be there for my children.” — Jen McCarron

3. “Guilt is an everyday thing. I feel terrible for being gone to appointments all the time, or that my 4-year-old has seen me take my many medications and doesn’t quite understand why Mommy needs so many vitamins. So if I cancel, don’t guilt-trip me. There’s a lot going on in my life, and my spare energy is spent on my babies.” — Jordann Chitty

4. “I do not miss important events because I want to! My children are my priority; however, my illness does not care. I am lucky to attend the functions I do!” — Robyn Eastwood

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5. “My chronic illness (Type 1 diabetes) has actually been a great way to relate to my blind son. We both have ‘imperfections’ with our bodies, but that doesn’t mean we are incapable of leading passionate, vibrant lives or that our value lies in our physical state. We get the opportunity to be creative problem solvers as we find ways to accomplish daily tasks. We can find joy in small things that others take for granted.” — Whitney Mielke

6. “Life is topsy-turvy, and yet I still do everything in my power to take care of the family. I might not look exhausted or stressed because I smile and laugh like an actor on a stage, and then whenever I can I fall apart at home when the kids are asleep, unable to move or think, only to do it again the next morning.” — Jacqueline Truong

7. “Despite my illness, I am still a great mom. I lean on the help of the supportive people in my life, but that doesn’t mean I’m not parenting her. It takes a village and I’ve carefully selected that village.” — Kristi Curl Mandsager

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8. “I wish people would understand why we allow my stepdaughter with us at the emergency room. She knows I have heart problems. I would rather she see the doctors trying to help me, even seeing them place an IV. It allows her the chance to ask questions and see that I am being helped. It takes away the fear of the unknown, the wonder if my going to hospital is my disappearance.” — Brandi Frausto

9. “Please don’t ask me why I [have] ‘only one kid.’ My rheumatoid arthritis gave me three years of infertility and pregnancy and delivery that nearly killed me. I love my job, but I also work because I need health insurance, and if I don’t have to be somewhere every day, I won’t get out of bed.” — Stephanie DeNicola Turner

10. “I weigh the energy an activity will take against the returns it will bring for my kids every day — and as often as I can, I make sure if there is a high return, I will use my limited energy to give my kids what I can.” — Kristin Wagner

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11. “I feel like a failure as a mother since my son has to go to daycare full time because I can’t care for him my myself. I hate it, and I miss him every. Single. Day.” — Sarah Codington

12. “I do the best I can. I don’t volunteer for a lot, not because I do not want to, but because I do not want to back out at the last minute and make things more difficult and appear to be unreliable. Most days the basics are enough of a challenge.” — Cynthia Rhodes Alberson

13. “I hate having to tell my kids no when they ask me to do something with them because Mommy doesn’t feel good. I don’t need anyone else to tell me I’m not doing enough with my kids. I beat myself up plenty for it.” — Hannah Wingert

parent chronic 4

14. “I do my best, and for my family that is more than enough, but in dark moments I cry for the next generations who will inherit my genes.” — Joy Hanford

15. “It pains me to see my children live in fear of my seizures and ensuing injuries. But I’m so proud of them for taking care of me when I do fall.” — Heather Baumann Kau

If you’re a parent and have a chronic illness, what’s one thing you wish people understood about your life? Let us know in the comments.

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21 Things Special Needs Parents Would Tell a Person Whose Child Just Got a Diagnosis

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Getting a diagnosis you’re unfamiliar with, or one that comes with preconceived notions, is not always easy — especially when it’s your child’s diagnosis. Sometimes, the best way to gain understanding is to talk to  those who’ve been there before.

We asked parents of children with special needs to share one thing they’d tell a parent whose child just got a diagnosis.

This is what they had to say:

1. “Stop. Take a seat. Now take a deep breath. Breathe out slowly. Now set your shoulders, you will have a lot of doctor appointments, therapists, possible surgeries and challenges ahead. You can do this, and you’ll never have to do it alone. We are here for you. We have been there. We will make it together. From one special needs mom to another.” — Nikki Lynn Nichols

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2. “You’ll meet many amazing people you would have never met if your child didn’t receive a diagnosis.” — Jennifer Joy Brooking

3. “The ‘label’ is just a name for what is/has been going on with your child. He is still the same child he was before and you are still his parent. Now you just have a starting place to help him.” — Renee Healey Nilson

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4. “Now that you do have a diagnosis you have the power to learn all the new ways to embrace the uniqueness that is your son or daughter. Make games out of therapy, learn alongside them what methods work best and ignore those that don’t help.” — Shannon Miskimen

5. “Receiving an unexpected diagnosis is not easy… Go through all the emotions you need to. Then pick yourself up, look at your child and be the parent you always planned on being before this diagnosis showed up.” — Ash N John Bricker

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6. “Never give up hope, never settle for what they say your child will not do, always focus on helping your child strive to do everything they can and want to do.” — Tabaitha Delight Travis

7. “Find your village, your people, your support. This will be family and old friends and new friends and most importantly other special needs parents. They get it. You will need to call them, cry to them, complain to them, ask them to do your laundry. They will all learn to love your kids almost as much as you do.” — Katie Smeltzer Ireland

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8. “My life is different from everyone else who does not have a child with special needs, [but] I wouldn’t change a thing.” — Suzanne Lee

9.  I was told my son would barely talk, that he wouldn’t be able to understand simple conversations or that public school would not be an option. He’s a seventh grade honors student. Never let anyone push you into underestimating your child.” — Tina Williams

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10. “You won’t have all the answers yet. Be proactive, learn. Your providers/teachers/team are on your side and they want your little one to succeed. And when you think your plate is full, get a bigger plate.” — Molly Russell

11. “Focus on what your child can do instead of only what he/she can’t. Stop to enjoy the ‘small’ things and celebrate every success/achievement.” — Gabriel Casanova

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12. “[Your] child is not the file/condition. See your child as an individual. Keep your eyes and heart on your child and you will have the strength to do and be what they will need to help them succeed.” — Jenafer Bauerle

13. “Fight for your child’s health and fight for the help your child needs. Also, don’t lose yourself caring for your child. You need to take care of yourself. Remember you are your child’s best advocates and you can’t take care of your child if you neglect yourself. It’s OK for you and your spouse to have date nights, you need them. It’s OK to get a sitter. I remember putting my child to bed and having a candlelight dinner with my hubby and watching a movie on the couch. Sometimes date night are at home, but it’s important for the little things.” — Mellonie Swinford

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14. “Though it may be hard, try to find comfort in the diagnosis. You have answers and knowledge… Now that you are armed with this knowledge, you can focus on the best ways to support your child, get the services he or she needs and allow him or her to realize his or her full potential, whatever that might be.” — Leslie Linn Brown

15. “A diagnosis does not determine your child’s future. No doctor can tell you accurately what a typical child’s future will hold, so don’t pay too much attention to all the ‘can’t/won’t dos’ that are attached to a diagnosis” — Kristin Thomas Cutlip

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16. “If life was easy, where would all the adventures be? Embrace every moment… Look at your little one for inspiration on your ‘bad’ days; their smile, their determination will pull you through.” — Annemarie Chapman

17. “You have more power than you think. Be a strong advocate to assure your child gets what he or she needs in school. Make sure your IEP plan includes everything your child needs.” — Kelli Kerns Brockington

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18. “Respect your feelings. Your feelings will be like a roller coaster.”– Rosa Valledor

19. “Always follow your gut feelings. If something doesn’t feel or sound right, keep investigating. Don’t let educators, doctors, therapists or anyone talk you into something you are uncomfortable with. Keep pushing forward; you know your child better than anyone.” — Bonnie Phillips

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20. “Right now you are probably pretty overwhelmed… but I promise you will find beauty in this new beginning.” — Lorrie Ashcraft Stewart

21. “Love your child. Stand up for what your child needs whether it is in an IEP meeting, going shopping or eating out at a restaurant. Try to educate your family and close friends about your child’s diagnosis. Some may not understand. Many may never try to understand. Just love your child and never let anyone mistreat them. Remember, you are not alone. Join a support group. Make friends with other parents who have a child with a similar diagnosis. Lastly, take it one day at a time.” — Renae Lewis Murphy

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If you’re a special needs parent, what’s one piece of advice you’d give to parents whose child just got a diagnosis? Let us know in the comments below!

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If You've Ever Wondered Why Parents of Children With Chronic Illness Spend So Much Time on the Phone

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I’ve recently had several billing problems with my son’s specialty pharmacy. This is not uncommon in rare or chronic diseases. Pharmacy problems. Insurance problems. Phone calls. Documentation. Repeat phone calls. Sometimes I feel like I spend all day on the phone or computer (on some days, I actually do).

To give an insight to those who don’t live in this world, and in an effort to provide an example of companies offering poor customer service, here is a transcript of my morning. Note that this is the fourth such call this month.

I dial and go through several prompts to attempt to contact the billing department.

On hold for eight minutes. [Not too bad considering my last call started with 20 minutes on hold.]

This is XXX in billing. How can I help you?

[Since I’ve already spent three hours this month on this same issue, detailing it every time, sitting on hold (generally 10-20 minutes), getting transferred and explaining the issue again, sometimes getting cut off and others being told something different each time, I thought I’d try to go a little higher up the food chain. All I’m trying to do is get them to bill my insurance for a month’s worth of medication I received over three weeks ago.]

Can I speak with a billing manager please?

I’m in billing.

Can I speak with a billing manager please?

I’m in billing. I can help you the same way as a billing manager.

We’ve tried to resolve this problem several times, with phone calls each lasting an hour or more, so I need to speak with someone who can resolve it and not have to repeat myself and be transferred.

OK, let me transfer you.

On hold for two minutes.

Thank you for calling. Are you a new patient, existing patient, or provider? Please press 1 for new patient, press 2 for existing patient, press 3 for provider.

I press 2.

What is the phone number including area code associated with this account?

XXX-XXX-XXXX

Please hold for our next available patient care advocate.

On hold for five minutes.

Thank you for calling. This is XXX in billing. How can I help you?

Can I speak with a billing manager please?

I’m in billing.

Can I speak with a billing manager please? We’ve had a repeated problem so I need to speak with someone who can resolve it and not have to repeat myself and be transferred.

OK, let me transfer you.

On hold for two minutes.

Thank you for calling. Are you a new patient, existing patient, or provider? Please press 1 for new patient, press 2 for existing patient, press 3 for provider.

I press 2.

What is the phone number including area code associated with this account?

XXX-XXX-XXXX

We’re sorry, your order cannot be completed through our automatic refill service. Please hold for our next available patient care advocate.

On hold for two minutes.

Hi, this is XXX in billing. How can I help you?

Can I speak with a billing manager please?

OK, let me transfer you.

On hold for fifteen minutes.

Hi. This is XXX and I can try to help you. Can I get some information from you so I can send information over to them when I reach someone?

Sure.

Do you have an account with us?

Yes.

Is this for you, your husband?

My son.

Can I have his last name, please?

XXX

Can I have his first name, please?

XXX

Can I have his date of birth, please?

XXX

Please verify your zip code?

XXX

Can you please wait a moment while I get the billing department on the line?

I’ve spoken to several people today in the billing department. What I need is a manager who can resolve this issue.

Well, I need to get them on the line first to get a manager. What is your name?

Melissa Hogan.

On hold for five minutes.

Ms. Hogan, I’m just checking back. I’m waiting for a rep to pick up so I can get a manager for you.

Thank you.

Do you still want to hold or can I give you a number that you can call back?

I’ve been redirected to the same prompts several times already this morning and spent 40 minutes on this call with no resolution, how else do I resolve this? Do you have a direct number of anyone I can reach?

No. I just have a number for billing.

Is it XXX? If so, I already have that number.

I just have the same number you have for billing.

I spoke last week to a lady named XXX who is a resolution team lead, can you
connect me to her?

Let me find her on the phone list. [On hold for one minute.] OK, yes, she is a manager. Let me try to connect you.

On hold for one minute.

Ms. Hogan, she is not answering, but let me try the other line for a supervisor. Can you hold please?

Minute 42:37 on this call.

On hold for five minutes.

Ms. Hogan, I apologize. I’m still waiting for a supervisor. Do you want to continue to hold?

I have no choice. This happens every time I call. I’m 48 minutes invested now. Sure.

OK, I’ll keep trying XXX as well.

On hold for nine minutes.

Hello, how can I help you? [So quiet, I can barely hear it.]

I can barely hear you. Is there a way to turn up the volume?

No. [Unintelligible] no volume.

OK, I may need you to repeat things. Are you a billing manager?

No. [Unintelligible]. Management.

I’m sorry, I couldn’t hear you. Are you a billing manager?

No, my name is XXX. I am a member of management.

[I explain the entire debacle, holding back the choice words floating in my head.]

I have in the records that a request was submitted last week for it to be billed. I can reach out to the representative who submitted to the request and check on the status.

Do you not want the money for the $35,000 worth of medication sitting in my fridge? You can “reach out to the representative?” When will this be billed, seeing as how I’ve had this medication for three weeks?

I don’t know what happened before last week. I have in the records that a request was submitted last week for it to be billed. All I can do is reach out to the representative who submitted to the request and check on the status.

And how will I know when this has been billed? My son’s medication bills out at almost $400,000 per year and I’m not going to order any more until things with you get resolved, if ever.

I will reach out and see what is going on. Let me confirm the information I have. Is your insurance XXX?

Yes.

I have your phone number as XXX. Is that where I can reach you?

Yes.

I will look into this. Is there anything else I can help you with?

No. [Hell no.]

Thank you for calling.

You’re welcome.

Minute 58:59. [Whew, I made it out before an hour! But by past experience, this will not be the last call.]

If you’ve ever wondered what parents of children with rare or chronic illnesses do all day, or why they often don’t have time for coffee, or can’t put their children in time-consuming sports and other activities, remember this post.

We can spend a ton of time on the phone about our child’s health care.

And then we blog about it.

A version of this post first appeared on SavingCase.com.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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