Support the Browns

Since welcoming Pearl Joy Brown into the world on July 27, 2012, the Brown family has encountered a host of blessings and challenges. If you’d like to help support them, following is information on how you can…

Ruth is a stay at home mom, raising 3 year old Abigail and 4 year old Brennan. Eric provides for his family by working merch on Christian music tours. All funds raised will help keep Eric home with his family for as long as possible and to help support Pearl’s medical needs.

The most important gift that we as Pearl’s extended family and friends can give is prayer. Above all, please continue to pray. But as needs arise – whether for meals or playdates, baby socks or cups of coffee – we can meet those, too, as best we can.

No matter what you can give, please know that it means so much to the Browns and, specifically, to little Pearl. We are so thankful for each of you.

 Donate directly to the Browns via Paypal here.

If you prefer, you can mail a check to the Browns:

Eric or Ruth Brown
PO Box 160083
Nashville, TN 37216

23 thoughts on “Support the Browns

  1. God does not make mistakes…your beautiful daughter was put on this earth for a special purpose….she is on the top of my prayer list as you and your entire family are….God bless you all.

  2. Your daughter is beautiful. I will be praying for her.
    My son was born with multiple birth defects, one of which is quite rare. he receives treatment at Johns Hopkins from a specialist who is an expert on his condition. I did a little poking around online, and it appears that Johns Hopkins does have some doctors who are experienced with alobar holoprosencephaly. Here is the link
    http://www.kennedykrieger.org/patient-care/patient-care-centers/holoprosencephaly-and-related-malformations-center

    We have been very pleased witht he care we have received from Johns Hopkins. I was nervous when I first called them, but I am so gals I made the call.

    We will be praying for your family.

    • It looks like that area at Johns Hopkins is a part of the Carter Center… While we don’t live close enough to visit one of their locations, they are a wealth of information for HPE and similar conditions. I am so thankful for the research they do, the database they put together and their willingness to be a help / support / resource for folks in our situation. They’ve given us some hope from a medical perspective.
      Pearl’s team at Vanderbilt is working hard to help her. While they don’t specialize in studying her condition, they’re more than willing to learn with us and to try to think outside the box to help her thrive. Good caring doctors are so important, and we are so thankful for her team at Vandy!

  3. You guys are such a witness. Thank you for your trust in the Lord!

    I do want to offer a word of encouragement and hope. We have a little boy about to turn 8 years old (Caden) who was born with 22Q11.2. We were told many of the same things about his future. We were highly encouraged to abort and told how difficult it would be to raise a special needs child. Obviously we resisted and the Lord has used Caden’s life to minister to so many. He is still exclusively tube fed and has surgery at least twice per year. He spent a total of 30 nights int he hospital in 2011, but only one night so far this year for recovery from a surgery. Is it hard? Yes, but so is it hard to partent “normal” kids. Is God in control? Yes! Don’t forget it. Hold tightly to each other and praise God on the good days and on the days when you can do nothing but cry.

    “The LORD said to him [Moses], “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the LORD?” Ex 4:11

    Pearl is a beautiful creation of God and you are wonderful parents!

  4. My daughter also has Holoprosemcephaly and goes to the Carter’s center. They are amazing. Also we need to get you connected to Families for HoPE if you are not already.

    Here is Abbey’s story:
    Abbey Grace’s Story……
    Defying the Odds
    A strong family, faith give birth to miracle
    By Amanda Kimble

    In less than four years, Abbey Grace Aardal has lived up to her name. The Hebrew name Abbey, a diminutive of Abigail, translates to “gives joy,” while Grace refers to the grace of God. “She may have a lot of issues, but to a lot of people, Abbey is a blessing,” her mother, Kelli, 31 said. “She’s my little miracle baby.” While the wide-eyed girl filled with curiosity about the world around her is a miracle, her mother, Kelli, says a list of medical issues could mean that her time on Earth is limited. The idea is a painful one – hard for any mother to fathom. But it is not something Kelli gives much thought to. Kelli’s reasoning is not denial, it is based on the fact that throughout her short life, Abbey has continued to defy the odds. From her rocky first two-and-a-half years of life to walking and communicating when doctor’s said she wouldn’t and outliving the life expectancy of children with Holoprosencephaly (HPE), Abbey’s life has been full of surprises. Building a family Kelli and Josh Aardal were high school sweethearts who married young and soon had a daughter, Jade. Some time later, Kelli had a miscarriage, a fairly common occurrence that doesn’t necessarily mean there are reproductive issues. And proof there was nothing wrong became apparent when a son, Kellin, was born. It was after two more pregnancies when a painful series of events began to unfold. Kelli carried two sons, Mason Garrett and Grayson Joshua, to the third trimesters, but both were stillborn. The young couple had to endure the process of purchasing tiny coffins, arranging graveside services and burying their babies in Hico, close to the family home. “They are buried at my grandfather, Vernon Busby’s, feet. Later, the couple welcomed a foster child into their lives to raise alongside their two children. With the loss of their two sons still weighing on their hearts, more pain soon followed when the child was removed from their care. “It was like losing another child all over again,” Kelli said. A troubled pregnancy Kelli learned she was pregnant for the sixth time in December 2006. The pregnancy was a welcomed blessing that told the Aardals that despite the previous losses, their family was still growing. But two weeks later, Kelli started bleeding. “I was told I was losing the baby,” she recalled. She went to see Dr. Bannie Lee Tabor, a maternal and fetal medical specialist in Fort Worth. “Dr. Tabor couldn’t see anything on the sonogram,” Kelli said. “He said I probably lost the baby, and that there was nothing to prevent me from getting pregnant again.” Two weeks later, Kelli still wasn’t feeling well, and went to see another doctor, who administered a pregnancy test. “The test showed that I was pregnant,” she said, adding that the doctor said the results could be a false positive, caused by “leftover hormone.” In January, she had another ultrasound. “They could see something, but the doctor said it looked like my body hadn’t fully cleaned itself following the miscarriage and that I should have a D&C (dilation and curettage) to finish the process,” she said. But something just didn’t feel right. She made an appointment to see the fetal specialist on Feb. 7 – almost two months after she first learned she was pregnant. En route to the appointment, Kelli said she prayed the whole way. “I needed to know,” she said. “I needed God to show me a sign, give me an answer. It was like I was trapped on a roller coaster, the ups and downs were too much. Either way, I had to know and would live with the answer, whatever it was.” Dr. Tabor was still convinced the tests would reveal the remains of a failed pregnancy. He warned Kelli as he pressed the fetal doppler against her stomach. “He hadn’t even looked at the screen, but I saw it and immediately began to cry,” Kelli recalled. Dancing across the screen was a strong heartbeat – 133 beats per minute. “I was seven weeks and six days,” Kelli said. “He said, ‘It is obvious you never lost the baby.’” At that moment, Kelli realized one thing about the life growing inside her. “That was God’s way of saying He was in control,” she said. Despite her faith, Kelli said the pregnancy was an emotional one. “I had just lost the children – our two sons and the foster child,” Kelli said. She had to take Heprin shots twice a day due to concerns of blood clots reaching her unborn child. At 38 weeks, on Sept. 14, 2007, delivery was induced and Abbey Grace Aardal made her debut into the world. “She was born before the doctor got there. My mom, Melba Jackson, helped deliver her,” Kelli said. Something is wrong That first night, medical complications began to surface. “She had trouble breathing and her oxygen levels were dropping,” Kelli said. Despite the problems that almost immediately followed her birth, Abbey was sent home from the hospital. Soon after, her medical issues began to snowball. Kelli said anytime Abbey would eat, she would have problems, but the complications were most evident when she slept. “Abbey would have spells,” Kelli said, adding that she repeatedly visited doctors to get to the bottom of her daughter’s issues. But the doctors continued to deliver the same diagnosis – that nothing was wrong. “As a mother, I knew something was wrong,” Kelli said. She began videotaping Abbey as she slept and stayed with her at all times. With her videotaped evidence in hand, Kelli and Josh began fighting for a diagnosis – and their daughter’s future. See Sunday’s edition of the Empire-Tribune to find out about Abbey’s diagnosis and how she is doing today Defying the odds Family moves forward despite shocking diagnosis Editor’s note: This is the second in a two-part series featuring a Hico child who has been dubbed “a miracle baby” by her family. In less than four years, Abbey Grace Aardal has lived up to her name. The Hebrew name Abbey, a diminutive of Abigail, translates to “gives joy,” while Grace refers to the grace of God. “She may have a lot of issues, but to a lot of people, Abbey is a blessing,” her mother, Kelli, 31, said. “She’s my little miracle baby.” The road to discover After numerous doctors visits and countless hospital stays, Kelli and Josh Aardal knew something was wrong with their youngest child Abbey Grace, but getting a diagnosis proved difficult. At birth, Kelli noticed her daughter’s nose appeared flat, and she appeared to have trouble breathing when she was asleep. When the breathing problems escalated, Abbey was taken to Cook Children’s Medical Center where she was diagnosed with a respiratory infection, prescribed antibiotics and would have been sent home if not for Kelli’s persistence. “’I told them we were not going to leave,’” Kelli recalled. “I requested overnight observation. This time, they got to see what she was doing.” Abbey had a CAT scan and doctors discovered Abbey’s nostrils were shaped like an hour glass, open on both ends and tapered in the middle. In November 2007, Abbey had nasal stints installed, and Kelli was shown how to use a special machine to clear her two-month-old daughter’s airways every three to four hours. On the return trip from the hospital, Kelli made frequent stops to check on Abbey. In Morgan Mill, she was fine. In less than half an hour, things would drastically change, Kelli did not know there was a problem until they arrived in Stephenville.“When I went to pull Abbey from the back seat, she was grey and limp,” Kelli recalled. “She was not breathing. Kelli rushed her to the doctor’s office where her mother worked. Abbey was experiencing respiratory failure and on the verge of cardiac arrest. She was taken back to Cook Children’s, where doctors determined that one of the nasal stints had collapsed. From there, more problems began to surface. It was determined Abbey had no tear ducts, so doctors created them. Chronic ear infections led to the installation of tubes, and her inner ear had to be reshaped. At one point, a genetic specialist noticed abnormalities with the mid-line of Abbey’s face. While the issues seemed minor to doctors, Kelli had the nagging feeling that there was a bigger problem. “I kept telling my husband something was not right,” Kelli said. Abbey was constantly dehydrated. “She was always sleeping and wouldn’t wake up,” Kelli said.Then in April 2009, when Abbey was not yet two years old, she had been hospitalized numerous times, and an MRI was ordered. When the test results came in, they showed that something was very wrong. Diagnosis The MRI showed that Abbey’s brain was not properly developed. Where the front portion of the human brain typically divides down the middle, Abbey’s frontal lobe was one mass – Holoprosencephaly (HPE).HPE is a birth defect that occurs during the first few weeks of intrauterine life, according to The Carter Centers for Brain Research.Suddenly it all began to make sense. With HPE, mild facial abnormalities that are seen in Abbey, including flat nostrils and her later noted cleft palate and a singular maxillary central incisor (upper middle tooth), are common.Another typical sign is developmental delays, and that revelation would finally shed light on the persistent dehydration. It was determined that Abbey has diabetes insipidus, a rare condition that relates to sodium levels rather than sugar, and a thyroid deficiency.Further complicating her condition is the fact that Abbey has no thirst mechanism, which eventually led to the installation of a G-button to allow her to get sufficient hydration and other nourishment her body needs. Treatment After being diagnosed with diabetes insipidus, Abbey was hospitalized for a week-long stay every two to three months. There was only one way the family could better manage their lives outside of a hospital – an i-STAT analyzer of their own.The i-STAT would allow Kelli and Josh to perform regular checks on Abbey’s sodium levels while remaining in communication with doctors from the comfort of their Hico home.But vendors refused to sell the machine to the family because the liabilities associated with misuse were too great.Dr. Paul Thorton, Abbey’s endochrinologist, refused to take no for an answer and set out on a mission to get the $12,000 analyzer for the Aardals, and their insurance provider agreed to foot half the bill. Thorton fought off the argument of liability by agreeing to take full legal responsibility, then he put his faith in Kelli, who underwent equipment training and competency testing. Finally, the fight for the i-STAT ended in February of this year.“Abbey has been in the hospital every April since she was born, but this April was the first she was not,” Kelli said. “This year also marks the longest period of time that she has ever been out of the hospital. Until now, it had never been more than five months. Her last hospital stay was in November 2010, almost eight months ago. The i-STAT was the biggest blessing ever. “ Defying the odds In addition to the deadly risks associated with diabetes insipidus, Abbey continues to defy the odds associated with HPE. Studies indicate that only 3 percent of all fetuses with the defect survive to delivery and the majority of those who are born do not survive longer than six months. She will celebrate her fourth birthday on Sept. 14. Due to the developmental delays, doctors were initially concerned about how she would develop emotionally. While she could grow into a happy child, it was very likely that she could instead be extremely angry or depressed.“The reality is that Abbey is an easy, go-lucky child who loves life,” Kelli said. “She has an amazing heart and a true interest in everything and everyone around her. She always notices the suffering and hardships of others. When she sees someone in trouble, she expresses concern and reaches out to them. She can’t stand for anyone to be in pain.” Constant care Abbey’s medical care is a never-ending cycle. She sees eight specialists and a primary care physician and undergoes therapy regularly. She also receives care at the Texas Scottish Rite Hospital every six months.Kelli takes on every part of her daughter’s care that she can manage. Thanks to a little help from a a couple of trusted family members – Kelli’s mother Melba Jackson and aunt Frances McClammy – the Aardals do spend quality time with their two older children.“Most people don’t realize how much parents take for granted,” she said. “We can’t hire a high school or college student, we have somebody who is trained to give her shots and administer treatments. Because of that, we have missed out on a lot, but wouldn’t trade Abbey for anything.”When asked what advice she would offer other parents, Kelli answered without a pause. “Don’t ever set limitations on your children,” Kelli said. “Without limitations, children will soar to places never thought or dreamed of – by you or their doctors.”

  5. I saw the news report about Pearl Joy on Tuesday and have been unable to stop thinking/praying for the whole family since then. I am the proud mother of a six month old baby girl who is healthy but dealing with a common cold/chest congestion. If I worry and my heart aches for her on something so minor, I can’t imagine how your heart and mind race when she is having problems breathing or having a seizure. I am uplifted by your faith. It is easy for me to believe and say now that God doesn’t make mistakes, he is in control and I will be thankful for the time I have….but you are living that walk. I pray for Pearl Joy, I pray for you as parents and I pray for your 2 other children. I look forward to hearing about the Great things God is going to do in Pearl Joy’s life and in the life of those around her. If reading her story, all the way down in Florida could impact my life and walk with Christ so much, I know lives must be changing for those who come in contact with a beautiful girl names Pearl Joy.

    God Bless,
    Teresa

  6. May God bless you and darling little Pearl. One of my best friends has just lost her darling daughter at nine months and two days suffering from SMA1. It is a real tragedy but to see little Lily’s zest for life and her parents’ belief was nothing short of inspiring. You are both amazing and little Pearl’s life is blessed and she has been sent here for a purpose. She is an angel sent from God

  7. Hey Ruth and Eric,
    This is Hannah, I’m friends with Trae and Kelly at TDF and our Lifegroup has been praying for you and your sweet family. I’ve been so touched by your story. I’m a stay at home mama too, and I’d love to have your sweet kiddos over to play so you and Pearl can get some much needed rest. Anytime. Seriously. robertandhannah@gmail.com 🙂
    Love, Hannah

  8. Let no doctor tell you something different than what the lead doctor our lord jesus has already told you in your heart, your baby girl was givin to you as a gift to share with the rest of the world with his wisdom and power she is serving a far greater purpose than you or i know. My son was born with no immune system seven years ago he was givin a bone marrow transplant and now is a pefectly healthy little boy, keep your eyes on christ and the storms will pass ‘God bless your family’

  9. Eric an Ruth,
    I loved reading your story. I live in Ohio. I had a precious angel born with Holoprosemcephaly. Austin Drake Justus 5/19/1998 to 5/20/1998. I only had him for a little over a day but i wouldnt give up that time i had with him for anything. he is my angel! You have a precious beautiful angel there. I just had to let you know that I will be praying for you an your precious Pearl. When I lost Austin pennsilvania childrens hospital sent me a letter wanting to know if i would give blood an let them get Austins blood from the hospital to help in the research on Holoprosemcephaly. I DID. If there was anything i could do to help find a way to help others like Austin an Pearl than I would do it in a heart beat. my God bless u!!

  10. Hello,
    We had a child with a severe bi-lateral cleft-palate. He is now 23. Before taking him home we were instructed by nurses on how to tube (gavage) feed him and were doing so until we met another mother in the hospital who showed us how to feed the baby with a dixie cup. She had 2 children with cleft palates and someone had helped her with this tip. I wanted to pass it on. This really works! Babies have a natural instinct to swallow. Our son was no-longer distressed by the tube and started to gain weight. he was a really happy baby!
    It’s so much easier on the parents.

    Many blessing to you.
    The Eldridge family

  11. A very important question is not what Pearl’s life will be, will she survive against the odds or anything like that, That is up to God. What matters is What message little Pearl has brought to our lifes. Personally, I fell like I am a better person after reading about your family’s story. Congratulations on your faith. I want to be a better human being now and I want to help and learn from people like you. God Bless you.
    The Gallegos family
    And may God bless all the people like you who deserve so much respect, appreciation and admiration. Yes, it is not about the money, it is not about the odds. It is just all about life, hope and kindness.
    And yes, a little help is on the mail already. It is not much, but it comes from the bottom of our hearts !!

  12. God is great and like you say, he knows what he does. I really admire your decision of having your baby after knowing how special she was. I wish more parents would make the decision you guys took. There is nothing as wonderful when we see our baby for the first time. It is great that Pearl had a chance to meet her wonderful parents. May The Lord always be with you and enjoy that beautiful baby.

  13. Your daughter and your family are a GIFT FROM GOD to me. You need to know that. You all have HONORED GOD. Pearl is a GREATER SAINT AND CHILD OF GOD than I will ever be. I love her. And I love you parents, and your other children. You all have a special place in the BOSOM OF GOD, and in my heart. The love of Jesus our Risen Lord be with you all.

  14. My prayers are with you all. Your child is a beautiful gift. Don’t let anyone ever tell you otherwise. Enjoy the wonderful little person you have been given for as long as God allows.

  15. I was having a realy tough day the sort where i just wanted to give up, things have been hard for over a year and today it felt hopeless. Then i came across this blog and your family’s story, Pearl’s story. I wept uncontrollably reading through your blog, i wept even harder everytime i saw a picture of the beautiful Pearl 🙂 she is gorgeous beyond words. Seeing her face, reading your story as parents, as a
    family was uplifting, it filled me with
    tremendous hope. Thank you. Youve done so
    much for me in sharing this journey. Pearl and
    your family will forever be in my prayers. God
    bless you all.
    Auckland, New Zealand.

  16. I just came across your blog through facebook. Your daughter Pearl is beautiful. Our God is so good. I love the video you posted of Pearl’s 16 week birthday. Especially the part at the end of your 3 yr. old singing Our God is so great so strong and so Mighty there is nothing our God cannot do! I love that song. It is so true. There is nothing God cannot do. Pearl’s life shows that. God is giving you more time then most doctors thought you would have with her. Don’t loose hope and keep trusting in God. He is carrying you through this time as you know. Please know that I will be praying for your family and for Pearl.

  17. Pearl is beautiful. Thank you for choosing life, which belongs to God. She is a miracle. I am praying for you all, and believing that Pearl is “whole” in the name of Jesus. Nothing is too big for our God; NOTHING. She will live and NOT die. Her life already is a testimony and will continue to be for the glory of her Maker – God. God will uphold you and He is doing a work in you through these trying times. His Word will be your strength. Love in Christ to you all; such a wonderful family.

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