I am setting up this Fund Raiser and asking for help for a Family I met just over a year ago. We have become Friends over the past year and I have learned a lot about their Family and the struggles they face and deal with on a daily basis.
Because its such a Complicated Disease and so much that they have faced and still have to face, its hard for me to explain it all in my own words. I asked the family to write a little bit about Rheanne's Story and all the things she has gone through since she was born. (Family's Story Below)
Rheanne was born, August 5th 2004. It was a regular delivery and she was a healthy 7lbs and 15 ounces. 10 days after she was born we noticed that’s she was getting what looked like brown birth marks, and a strawberry birth mark in the middle of her chest.
At the first Doctors appointment for her I inquired as to the Brown Spots, and was told that they were just Birth Marks and nothing to worry about, and that she was healthy and happy. But he sent us to a Skin Specialist for the Strawberry...just to double check.
At the Skin Specialist we were told that it was a Strawberry, but because of the location on her Chest just to keep an eye on it.
Rheanne continued to grow and was at each mile stone that was expected, speech, motor skills etc...
At 9 months of age she was jumping in her jolly jumper, laughing and playing as usual when she got sick to her stomach out of the blue. There was NO warning, NO fever, NO nothing. I took her out of the jolly jumper and ran a bath to clean her up and check her. During the bath I noticed that she wasn’t talking or moving around as she usually did during her bath time. She just looked to the right and her arm was doing sort of a little wave. I couldn’t get her to look at me or answer me. At this point I called for her Dad, Robert, who said to check her temperature. I took her out of the bath and wiped her down and put lotion on her and still she was not responding. At this point I started to panic and her Dad said get her dressed time to go to the Hospital.
We got to the Hospital with in 10 minutes and they admitted her right away. The Doctor on call put in an IV and there was still No response from Rheanne. They were rallying around her trying to bring her out of it with the usual Medicines and Procedures for Seizures. At this point the Doctor called for Air Vac to take Rheanne to Children's Stollery Hospital in Edmonton.
During the time we waited for Air Vac, the Doctor came out and told us that he was not sure what was going on, and that they were doing all they could, but be prepared for the worst as they had NO idea what was happening.
Just before the Air Vac got there Rheanne came out of it and cried MaMa. Her Dad and I were never so Happy to hear that word. At this point she had been in what they called a FEBRAL Seizure, because they had No idea what it was for over an hour.
We spent a week at Stollery with them doing every test possible, and they still did not know what had happened. We then had a Neurologist come in and say he was going to do an MRI to check for NEUROFIBROMATOSIS, We were Neuro what???
He than explained that the CAFE AULAIT Spots she had were usually a sign that there was a NEUROLOGICAL problem. He said it was usually to early to tell if it was NF, but because of the situation it might.
The test came back again, but he said before she started kindergarten take her to our Family Doctor and ask to be referred to a Pediatrician and have her tested again. They had No idea what happened, Again they called it a FEBRAL Seizure.
After the Seizure we noticed that her Speech had slowed down and was slurred, her Balance was off, and her Right side was not as strong as the Left. The Doctor's kept saying she was a happy healthy child, but I noticed that she was not keeping up with her sister Patricia, who is 15 months younger then Rheanne, and that Patricia even started to surpass her.
At Age 3 ½ I noticed her speech was still not clear and if her back was to turned to you she did not respond. I then took her to an Audiologist to have her Hearing checked. It was then that we found out she was Mildly Deaf in both ears. So it was then that she started wearing Hearing Aids.
Rheanne went to Preschool at Our Place Child Care Center, she enjoyed every minute of it, but she was quiet, and she was still getting more Cafe Au Spots
Just before she started Kindergarten I took Rheanne to Dr. Lubba, Our Family Doctor at the time and requested that he refer her to a Pediatrician. He asked “why there was nothing wrong with Rheanne aside from the Hearing Loss.” I then explained what the Neurologist had said at Stollery, but he knew the story as its all in her Medical File.
Once referred we went to Kamloop's to Dr. Van Dyk who checked Rheanne over and looked through her medical file told us that he was referring us to a Neurologist at Children's Hospital in Vancouver. If he could Diagnose it, he would, but it had to be done there, but he said if she didn’t have NF he would eat his shirt.
We then went to Children's Hospital, there she saw a Neurologist, Genetics, had an MRI done, Blood Work, as well as other Tests. Genealogy because NF is usually a Genetic Disease, we as a family went through a battery of questions. They then said that Rheanne's was a Mutation, meaning no else in the family has it, but her children and her children's - children had a 50 percent chance of getting it.
On her 5th Birthday the Diagnosis came back, NF1 with NF 2 Tendencies. The reason for this was there has never been anyone in the world with both, but Rheanne had every symptom or problem except one...to classify as just NF1
When she was 6 years old they sent her for an EEG because we as her parents and the teachers at the School noticed that Rheanne was a happy child and easy going but she also had a lot of Zoning Out periods where she was not Responsive for a couple of minutes, but then she would come out of it and act as if nothing had happened. She was put on Meds for the Seizures, 2 types to try to control them.
We took her to Dr. Van Dyk who we where seeing every 3 months to monitor the NF. The EEG came back Abnormal, which from they could see she was having Absent Seizures. She was having anywhere from 30 or more a day, even in her sleep because she fell asleep during the EEG and they were still happening.
I also changed Family Doctors, as not many Medical Professionals in 100 Mile know what NF is or how to deal with it or the complications caused by it. Every time we went to a Hospital here with Rheanne and told them, or they or read her file we would be asked,... “What is NF?” and we would have to explain in as little words as possible the basics of the Disease. We now deal with Dr. Street, Whom I have to say... as Soon as he Learned of her Diagnosis, he Learned all about the Disease and what to watch out for and is Very Attentive to Rheanne's needs.
I also put a bulletin board up with pamphlets about NF, and its Affects to give information to the Medical Personnel and People going into the Health Clinic at the Hospital.
She was also sent to a Cardiologist for tests on her Heart, the results came back that her Pulmonary Valve was smaller than it should be and she had a Heart Murmur as well. They'll keep an eye on it as she grows and hopefully she will not need Surgery for that.
At the Age of 6 ½ years old she started having Head Aches, had NO Depth Perception and NO balance, it got so bad that she couldn’t walk unassisted. We spent another week in the Hospital, they did another MRI an CT scan.
The results came back and she was Diagnosed with Altitude Sickness. Basically the Water builds up on the Brain and has no where to go, so she had to have it Drained by doing a Spinal every 2 to 3 months. She was also on Medications for Pain and the Water Build up on her Brain.
It was then that the Neurologist showed me her MRI and showed me where Rheanne had Tumors. I was shocked!! She had one behind her Right Eye, one on her T9 Vertibray, as well as her Brain was Riddled with them.
Now the Tumors from the NF are slow growing. They can Grow on the Inside or on the Outside the Skin of the Body. Rheanne's at this point were all on the Inside where you could not openly see them. They do not take them out unless they are Life Threatening or so Painful that the person cannot function, because the Tumors can replace themselves with 1 to 1000 more. So by the age of 6 she was on 3 types of Potent Medications.
Rheanne went to School the days she was feeling up to it and even went to School when she was tired, they had a little area in the Classroom where she could lie down, which she did a lot of, but she still wanted to go, she still wanted to be with other kids and see Marleen who is her Assistant while she is there. If they went for walks Rheanne went in the Wheelchair, if they were doing something Rheanne couldn’t do on her own Marleen was there to help her. I couldn’t have been more grateful for this lady who shows such compassion and care for my child, and her Teachers as well who were always watchful and careful. Marleen knows Rheanne so well, she knew before Rheanne would even have a Seizure and whether or not she was having a bad day.
Rheanne sees her Pediatrician every month in Kamloop's, and every 3 months she goes to Children's Hospital for Check Ups. She see's an Ophthalmologist because of the Tumor behind her Eye, Neurologist for the NF and complications, and I might add I switched Neurologists because the one that she originally had was doing nothing and not listening to the concerns of Rheanne's Pediatrician.
At the Age of 7 Rheanne was sent to a Sleep Doctor because she was sleeping all the time, and even when she was sleeping she didn’t really sleep. They did a Sleep Study and in the 6 hours that she slept that night she woke up 75 times. It was not concluded that she needed to be put on Gabapentin for pain, and she was also Diagnosed with a Sleep Disorder........................................
When she was 8 years old we noticed that there was a Swelling under her Eye and beside her Nose. We were then referred to Plastic Surgery. The Plastic Surgeon said he wanted a CT and an MRI to check to see if it was Bone or Tumor Growing. He also thought that it was affecting her breathing. After the tests results came back for that it was concluded that the Structure was Bone and Growing, but he wanted to hold off as long as he could for Surgery because it is a VERY Invasive.
The Surgery basically in tells of making a cut by her ear and taking her face off to get at it and hope that they don’t touch any nerve endings that can affect her Sight, her Facial Expressions and so forth.
So we were sent to an Ears, Throat and Nose Specialist. From there it was concluded that she needed Surgery to take her Tonsils and Adnoid's in the hopes that it would help her Breathing, hence putting the other Surgery on hold till absolutely necessary.
We spent 3 weeks in Vancouver as the Doctor didn’t want Rheanne to come back to 100 Mile in case there was bleeding and couldn’t get her back to him in time. That was in May of 2013
Rheanne went for Dental Surgery because of all the Medications, and being a Picky Eater because her Taste Buds are Over Sensitive have done a Havoc on her teeth. That was just a couple of moths ago....the total cost was around $7000.00
Since then Rheanne still goes for her MRI's and Neurologist every 3 months and her Pediatrician every month and we are also on our way back in August the week after the Derby (Aug, 16th & 17th 2014) to see the Plastic Surgeon because the Surgery for her Throat seems to have not worked. She takes the Maximum Dosage for the 3 Medications that she is on.
Rheanne also goes to Shriner's Hospital in Portland, as they keep an eye on her Tumors that are on her Spine and any other Tumors near it. We make this trip once a year. Scoliosis has now shown itself on her list of things to deal with, and we will be making a trip to Portland in September 2014
Every time we see the Doctor's they say she is a Puzzle, they are trying to unravel. They said that Every Day that she wakes up is a good day! We as her Parents take it 1 day at a time. We don’t treat her differently from any of our 4 other children, but we count ourselves blessed when we see her smiling face in the morning!
Her siblings know that she is Sick and they watch out for her as well, but Rheanne is a Fighter, ALWAYS has been and she deals with all the Medical Tests and Appointments just like they have to be done, and the faster she can get through it the faster it will be done, and she can go shopping!!
This is why we hold the Annual “Fishing For A Cure” Fundraiser and Fishing Derby. To help with Costs of Travel, Food, Gas, and her Medications that she takes everyday, twice a day. I might add that hopefully this year Rheanne will not have any complications during the Derby as in previous years. Twice nearly had to be AirVaced to Children's Hospital.
Thank you for taking the time to read Rheanne's Story :)
This Family still has a long road ahead of them. The strength they have is amazing!!
We just had Rheannes Fishing Durby and it went good....but sad to say that her Tumor in her Face by her Eye is growing bigger and she has to go see the Plastic Surgeon soon to see what they should do. This Family faces such scary news and other complications so often. I wish I could do more to help them.
No family or child should ever have to go through this and we hope that we can get the word out to raise awareness on this Disease.
Please help and if you cant please pray for this little girl and her family. We need to find a cure for this Disease!!
My goal is to raise money to help them with the Travel Costs, Medical Bills, Medications, Bills and have some Security for the Future for any other Obstacle they may face. Rheanne's Parents both work so hard everyday and have been so strong for Rheanne and their other kids.
I really want to help take some of their worries away, so when they take time off they don’t struggle financially, and so they can enjoy more time together and not be so tired from being stretched so thin. I couldn’t imagine trying to pay my normal bills and worry about money for Hospital Trips and all the Medications. Any thing helps and would be totally Appreciated!!
Any thing helps and would be totally Appreciated!!
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