Meghan's Beautiful Struggle

For: Meghan Ross
Allen, TX
Organizer: Stephanie Ross
$19,200
of $57,000 goal.
Raised by 87 donors
33% Complete

The Story

MEGHAN'S BEAUTIFUL STRUGGLE

A 14 year old girl should be carefree and her only worries which friends she’s  going to be with, getting her homework done and what to wear to that special dance.  Meghan is a loving and talented young teen who has had to deal with serious health issues most of her life.  Most people who have met her have no idea she has lived with so many debilitating obstacles.  She smiles, jokes, is very positive, shows love to others and helps others whenever she can - she has truly fought a beautiful struggle.  But, her medical issues have  grown more severe in recent years and she’s wearing down physically and fights to stay positive and strong emotionally.  Our family has, at this point totally run out of all money. We have used all of our retirement fund, have no credit and we are deeply in debt due to (for us) staggering medical bills. Much of this debt is from years of Meghan’s treatments, procedures and tests, and other medical bills.

Our primary goal is to be able to get Meghan the best treatment available so she can live a more normal life and use her talents and care for others in the ways that she longs to contribute.  For more detail, read "Meghan's Story" below.  Her top three most pressing medical needs listed with the portion of the costs that are not covered by our medical insurance are:

  • $8,000 - Eye Neuro-therapy and Prism glasses. CHANGE was 9,000 
  • $4,000 - Jaw Surgery and Orthodontics  CHANGE needed more dental was 6,000
  • $2,000 minimum - Genetic Testing and Analysis  CHANGE needed more testing not covered by insurance 5,000

Meghan's attitude has remained remarkably positive through all her health problems. She laughs and helps others. She tells us she’s sorry she is costing us so much. It hurts deeply to have our daughter feel bad because she's upset about money for treatments she desperately needs for her health.


If you wish to donate, use the Donate Now button, or send a check to:

Stephanie Ross
Meghan’s Beautiful Struggle  (please put in note section)
P.O. Box 1564
Allen, TX 75013

Even if you cannot contribute sharing our page and putting your own personal message up would be greatly appreciated.

THANK YOU SO MUCH for any help you can give.  Your prayers for Meghan and our family are greatly appreciated.




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MEGHAN'S STORY
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About five years ago Meghan fell off her bike when she hit a rock, she flew off her seat head first and slammed her chin on the pavement.  Even though she was wearing a helmet she suffered a serious concussion.  Her doctors and we were not aware at the time exactly how serious it was, but it has changed her life in devastating ways.

Eyesight Issues

Over the years her eyesight has worsened because her brain can’t focus both eyes together. She has almost no depth perception and even going into a store or riding in a car is very difficult for her now. To her it seems like things are coming  toward her at breathtaking speeds and are going to hit her in the face.  She will inadvertently duck, stagger or even fall down in an effort to protect herself. The eyes are so unable to work together that often and unexpectedly she’ll be overcome with intense nausea.  It has gotten to the point that even reading (which she loves to do) is difficult for her now, and school work requiring reading or math problems for any length of time has become nearly impossible for her to do on her own.

Her neuro-opthamologist has explained that her neuro pathways cannot  deal with all the information she gets and it is resulting in tunnel vision.  Over the last couple of weeks she has had over eight hours of testing for her eyes.  The testing has shown she has visual spatial disorientation, oculomotor dysfunction, and binocular vision dysfunction.  All of these conditions are going to take very expensive special glasses and extensive therapy to correct, none of which our insurance will pay for, except for the eyeglass frames. 

Dental Issues

When Meghan hit her chin in the bicycle accident, her teeth and jaw were affected quite negatively.  She had her jaw worked on right way after the accident and had braces and a metal adjuster put on then.  Those first braces were removed and we were told she would need more extensive work done when she got older. She still has the metal adjuster in her mouth for her jaw but it is seriously past time to change that and get her into new braces. She also has a condition where she does not have all her permanent teeth so she will be missing a tooth near the front when her baby tooth comes out and it is starting to get loose.  All this work is overdue and we must get the metal out of her mouth, but due to the cost, we have been unable to continue her treatment.  Insurance will pay for some of the orthodontic work but not all that is required, which is more extensive than normal braces.

Genetic and Digestive Issues

Two major issues Meghan has suffered with are a genetic blood disorder which affects her ability to assimilate certain key nutrients and a bladder birth defect. These have created major allergies to many foods and has caused her excruciating stomach and intestinal pains. She has fought serious digestive tract issues, having been born with her bladder not fully developed and has suffered multiple stomach and bladder infections from birth. Last year, just after her 13th birthday she spent six months in almost constant intense stomach pain and spasms, and underwent multiple tests at Children’s Hospital in Dallas, TX, as well as sessions with gastroenterologists and pain specialists. She could hardly leave the house in those six months except for her multiple doctor and ER visits. She would often lie on the floor in a ball with pain and nausea. At one very low and very scary point, her body went into starvation mode, as everything she ate or drank caused her spasms of pain to the point she could no longer eat except the smallest pieces of highly refined foods.

A wonderful doctor at Dallas Children’s Hospital researched all her medical history and came to the conclusion most of her digestive issues were triggered by the bladder problem she had at birth which has led to a functional nerve disorder of the entirety of her digestive system. It is likely she will be on medications the rest of her life. While she still has pain at times, the meds have greatly eased her pain and nausea. But the massive amount of medical bills from tests and hospitals still need to be paid.  The doctor also feels she should get full genetic testing to see if some of her other medical problems are due to other?#160;genetic conditions.  We do know she has mutation of her MTHFR gene which impacts her ability to metabolize B-vitamins.  As genetic testing is at the forefront of the medical community, the doctors do not always agree on the full impact this mutation has on her health, but we will keep this information updated as we find out more about her medical conditions.

Severe Lack of Energy

Although Meghan has always needed more sleep than the average child, since she has entered puberty, her needs have increased to the point where they severely impact her ability to have a normal life.  In order to function the next day, Meghan requires an absolute minimum of 12 and usually 14.5 hours of sleep each night.  She will forego activities that she loves to do and put herself to bed at 7:30 or earlier when she has any extra exertion - even something that most would consider completely inconsequential in terms of energy, like spending time talking with friends, or singing.  We've learned the hard way that it's not just a normal teenager wanting to sleep too much - when she doesn't get her required sleep, she gets really sick very quickly with severe consequences, often causing a week of absolutely NO energy and almost complete collapse.

The doctors do not agree with what is causing this lack of energy and it may be more than one thing.   Her neuro-opthamologist is sure that a good portion of this is caused by her vision problems, but her body's inability to normally metabolize B vitamins is also a likely culprit.  Too much folic acid is problematic, as it accumulates in her system and with her compromised gene, she cannot eliminate it in the normal process.  Some doctors have had good success with similar issues by prescribing a prescription dosage of folate, but it requires a doctor with experience on the MTHFR gene mutation and testing to make sure that it is not too much for her system.

Meghan’s Struggles and Dreams

Meghan loves life and has done all she can to meet it head on, despite the struggles. She has always loved to help others when she could. Her challenges have made her very empathetic for others in need or pain. She loves to help younger children, and assists in Girl Scouts and at her church.  Meghan loves to play guitar, compose music, and sing. She dreams of making a career in the music industry.  She uses her musical talent to sing special music at church and various benefits, and used to sing at open mics locally, but she can no longer perform for an extended time in public due to her eye issues.  At one particularly low point, she couldn't even place her guitar up to her stomach for six months due to the sensitivity and pain that any pressure against her abdomen would cause.

She has composed over 80 songs to date but her eyes are hindering her ability to read music as all the lines blur together.  She’s also authored two books and multiple short stories. She has so much talent and desire to give, yet continues to be pulled down with a severe lack of energy, eye strain and sickness that prevents her from fulfilling her potential. She is falling behind in school due to these issues as well.

It is devastating to hear this bright, positive child moan in pain and/or frustration and tell us she “has no life” and it’s also amazing to see her bounce back and try again, day after day.  Meghan's attitude has remained so positive through all the struggles.  She laughs and helps others. She tells us she is sorry she is costing us so much. It hurts deeply to hear our daughter feel bad because she's upset over us spending money for the things she desperately needs for her health and to ‘have a life’..

It is very difficult and humbling to ask for help but when we see our sweet daughter going through so much and putting up such a beautiful struggle, we just have to put our own pride aside to get her the medical help she needs.

Thank you so much for taking the time to read her story, and for any help you can give.  Your prayers for Meghan and our family are greatly appreciated. 

If you wish to donate, use the Donate Now button, or send a check to:

Stephanie Ross
Meghan’s Beautiful Struggle  (please put in note section) Box Number Changed
P.O. Box 2091
Allen, TX 75013

Even if you cannot contribute sharing our page and putting your own personal message up would be greatly appreciated.

THANK YOU SO MUCH for any help you can give.  Your prayers for Meghan and our family are greatly appreciated.

Fundraiser Updates

Posted on February 11, 2016

Posted on February 11, 2016

Update on Meghan Ross
by Stephanie Ross

So, many of you have asked for an update and I keep trying to figure out exactly how to explain her condition now. First of all she is still doing much better than she was because the horrible pain is being controlled with medication. Her eyes are also doing wonderfully, she no longer has to go in for therapy since she does it at home now. We just take her in every 3 months for a check up. She may never play very active sports but she can live a normal life: she can read, go into stores and be out with friends.

Meghan is doing much better and has periods (at times weeks) where she is up and active. But, if there is to much activity like at the fall festival her body collapsed on her. When we were at Orange Beach this fall she was able to be up for 5 days and then she was down for 2 weeks. Meghan and I were also able to attend the winter family weekend because 2 wonderful families gave us a ride and a place to stay. We had a marvelous time but by the time we got home Meghan was sick and unable to function for about 4 weeks.

What we are doing now:

Since we have not been able to find out what is causing a lot of her problems through traditional medication (and we have tried since she was born) we are using an MD that specializes in Integrative Medicine. We have had a total body thermography done (here is a web site that explains what it is http://total-body-thermography.com/ ). It showed (the report always says apparent or possible) lymph blockage in the neck, pancreas toxicity, kidney toxicity, food intolerance and lymph blockages in breast. When her over all body temperature was lowered her liver, kidney and pancreas would slow down and not function normally. The assumption is being made that this happens whenever she gets hot or cold. Which makes since because she gets very tired and usually can't function (or even want to eat) when this happens.

The suggestion right now is to try and build up her body with vitamins and food that will work with her MTHFR and do a parasite cleanse. Keeping her well to do this has been a challenge. We are having trouble keeping weight on since she has been sick. She lost about 10 percent of her weight again, we have it back up a bit now.

We want to THANK everyone for their continued help, PRAYER, and cards. We know God is continually with us and helps us out. He causes things to happen at His time and in His way


Posted on July 3, 2015

Posted on July 3, 2015


Thank you, Thank you, to all who have been so generous in your support and prayers. We will never be able to express the gratitude we feel. We pray God will continually pour His blessings out to you.

We were able to get Meghan her glasses on May 5th and therapy started on May 11th. Just the glasses have made a big difference. The prisms are keeping her eyes from blurring out and she is being able to read some and is more active, and with the therapy she continues to improve.

Meghan's eye therapy continues to go well and she loves her therapist. The treatments can make her tired and give her a headache at times, but she can really tell the difference. I know this sounds funny to some but a couple of weeks ago she was able to catch a bean bag for the first time in years. Before all movement was just a blur and she could not tell where the object was.

She still has trouble going into stores especially if the aisles are narrow. It makes her eyes blur and she feels nauseated. But, she is able to read again for longer periods of times which is really helping with school work and just fun, she loves to read.

We have consulted with specialist about her teeth and jaw and at first the news was worse than we thought. Her lower jaw has not been growing and they thought because of this her tongue might start choking her when she is older. We were told they would most likely need to break her jaw and put in bone extenders.

After more measurements of jaw bones and tongue size they have decided this won't be necessary. She will still need extensive work, but we are so thankful they will not need to break her jaw. The end of July she will start the process of having some teeth pulled and having orthodontic work done.  We are praying her lower jaw will grow a little more.

Please pray for camp, (Carter) she is very excited and looking forward to being with friends. She is also really hoping she can do a few more of the activities. Last year the only physical activity she did was archery which she loved but she hopes to make it to the lake and a few more things this year. I go to camp as a worker which is a blast, but I'm also there so Meg can sleep in the infirmary and be down whenever needed.

After Camp, Meghan continues on the 2nd half of therapy. She will also start the dental work, and see a genetic specialist in August.

We have had Meghan anointed so many times since birth and at times miracles have happened right away. With these health issues God is letting us learn another lesson in faith: that He will provide what we need in ways we don't expect. I want to thank you again for letting God use you to help build our faith, hope, and joy. May God bless you spiritually and give you the petitions of your heart.

Again, Thank you so much for your help. You will never know how much it means to us. Sending lots of thanks and love your way.

With Love & Gratitude,

Jerry, Stephanie & Meghan Ross

Happy 4th of July.  We put Meghan singing the National Anthem with Girl Scouts at a Side Kicks soccer game.


Posted on May 31, 2015

Posted on May 31, 2015

Update on Meghan

Thanks you all so much for your support, cards, messages, love & prayers. It has been a rough couple of weeks. Meghan and I both got strep throat. I am better but Meghan has not bounced back from it. She is back to sleeping most of the day away and not feeling well. When she is up her headaches are back and she is physically sick some of the time. So, prayers are really appreciated.

Her eye therapy is going well. She has only missed one appointment and is doing her therapy here at home too. We just need her well so they can really see what is going on with her eyes and work with her better. We don't want to waste money on the therapy if she is to sick or her eyes are tired. But, once they start they want it to keep going because they are retraining the brain to work with the eyes correctly.

I think I have found a doctor to do the genetic testing. One who is a medical doctor and has dealt with genetic issues using conventional medicine and naturopathic methods. We have been told she will work with Meghan's other doctors. Since there is more than one issue it is very important to us that the doctors work together.

We know God is the ultimate healer and pray for His healing and His hand in directing us in our decisions.

Thank you all again for everything.

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