Monthly Archives: December 2014

Visit to Stanford

Thursday afternoon we headed to Stanford for Kiira’s appointment at the once-a-month EB clinic on Friday. It took us about four hours to do the 2-1/2 hour drive and Kiira slept the whole way. We thought we would get a good nights sleep, so we went to sleep early, but Kiira had other plans for us. Despite our noise machine, she either grunted or cried through the night–the crying in the night is unusual. Finally I pulled her in bed with us and although she slept, she squirmed her way down, essentially kicking me out of bed. So we began our day exhausted.

We headed to Stanford early Friday morning, not quite knowing what to expect. The hospital was much older and smaller than anticipated and while we waited for the elevator, we saw some older kids with EB. Although they were walking, they were fully wrapped in bandages.

We arrived to the office and after we checked in, a couple of the health care assistants approached us and said “This is the famous Kiira! We saw her on the news this morning!” We were shocked that the story had made it to the Bay Area since it was just a local Sacramento news station. We then went into a doctors office and waited for a team of doctors to visit–and what a team it was! 3 dermatologists, a physical therapist, occupational therapist, nutritionist, social worker, clinician (wound care specialist), and even a visit from the semi-retired head of EB trials at Stanford. They all coKiira examins her handmmented on how great Kiira looks, as they expected much worse, based on her genetics that they reviewed before coming in. They had us unwrap Kiira’s hands–both at the same time, which we haven’t done since she was born. Not only that, they had her play and keep her hands free for an extended amount of time and she loves to look at her hands! We’ve been worried about some deformity in her left hand, and apparently that’s common with EB so we were taught a new wrapping technique, just as I was really getting our old one down. The new wrapping allows Kiira to move her fingers, exposes her finger tips so she can experience touch, and pulls her fingers in the right direction.

Kiira's blistered wristOf course, all this handling of Kiira did not leave her unscathed. She has a “bad” wrist and that skin got torn and later blistered, and later that night we noticed a blister on her bad pinkie and finger tip. We were told to allow Kiira play time with her hands every day, but it makes me so nervous because she is wild with her hands and has sharp, thick nails that scratch her wherever she hits herself. Plus, some fingers that are easily injured over and over. Not only that, but dressing changes already take me 1-2 hours, so allowing playtime increases that time significantly since she won’t be eating or sleepy when doing her hands, which makes wrapping nearly impossible on a tightly clenched fisted infant, resulting in even more injury. However, they reminded me that her playtime is important to her development and keeping her injury-free could delay her development, so it’s this compromise between skin integrity and development. Trying to fit in dressing changes, my other 2 kids, work, and household duties is getting tougher by the moment.

After we finished with Kiira’s hands, we unwrapped her feet and since she has no open wounds, we are now able to reduce the products we use on her feet, but it’s important we still separate her toes (we learned that even without injury, EB causes the skin to want to fuse together so fingers and toes will always need to be separated with something that keeps enough downward pressure to keep the skin from growing together). We also still pad her heels, but with reducing the moisture on her feet from all the Vaseline we used, we think we will see better healing.

The OT and PT gave us tips on how to help Kiira’s physical development such as plenty of tummy time, including holding her up on my shoulder–yet another thing I have avoided so I don’t cause her injury. They showed us how to push on her thumb pad to get her to extend her thumb since it always wants to stay clenched in her fist. We were told to pad her feet, toes, knees and hands when she starts crawling.

The nutritionist said she is currently eating enough for her age and size, but if she gets open wounds she will need about 1-1/2x as much food. There are ways to increase her calories without jumping to a G-tube, such as getting her to eat more at each meal to expand her stomach or add protein to her milk. Unless her situation changes where she develops reflux, esophageal strictures, or needs some other kind of surgery, Kiira does not need a G-tube.

The dermatologists felt that Kiira’s skin looks amazing. Sure she has some pink areas from her injuries at birth, but no open wounds and she is healing well. I know God isKiira's Thumb protecting her, but part of me is so fearful that it won’t last. We had gone a couple of weeks without blisters, but since the new wrapping procedure, we’ve had to pop 4 blisters and she has 3 tiny ones and some scratches. I feel so torn between going back to what we were doing to protect her skin, hoping it will get stronger as she gets older, but at the risk of causing deformity or delayed development. A choice no mother should have to make.

The other part of our appointment ended up involving Dr. Alfred Lane, a semi-retired Professor of Dermatology and of Pediatrics at Stanford, who has dedicated the last 25 years to EB research (see all clinical trials). Stanford is in the midst of a Gene Transfer clinical trial starting with 5 adults. They hope to have the 5th one in February and then the trial can include children. “The trial will include a graft…of the patient’s own skin that has been genetically engineered in the investigators lab to express this missing protein. The purpose of this study is to achieve proof-of-concept for this general approach to cell-based gene therapy in humans and to set the stage for further therapeutic extension in RDEB. The investigators will basically take a subject’s own cells, correct them in culture, and then transplant the corrected cells back onto them.” In this case, they are removing the mutation so that the skin can produce Collagen VII. We love that doctors like Dr. Lane are taking on “orphan diseases” (too rare to receive much funding for research), so they can help people like our sweet Kiira.

When Dr. Lane entered the room, he told us Yahoo!News had contacted him because of Kiira. Again, we were amazed at how the word was traveling around. We apologized for the intrusion to him, but he felt the exposure was good, because it gets awareness of these trials and research companies, and hopefully funding as well. He explained a couple of other trials in the works, but all of the trials only fix the outer skin, not the internal. The risk of doing the Bone Marrow Transplant (BMT), is that since it does affect the internal, you risk a systemic (bad) reaction, whereas if there is a bad reaction on the skin, it only affects a small portion. While I already see problem areas on Kiira that could definitely benefit from a skin graft, if we do the BMT, we will not be eligible for these other trials. So we still did not get approval to visit with Dr. Tolar in Minnesota to consult with him about the BMT (we could probably go if we pay out of pocket). Instead, we were told to find out why it’s so costly (true clinical trials are free), talk to patients who had it 2-3 years ago and hear about their experience, and since Kiira is looking so good for now, don’t jump into it–see how she does over the next few months or year and then decide if we still want to take the risk.

Of course the exhaustion, lack of food, and 4 hours of meeting with doctors started to catch up with me and I started crying in the office. I don’t want the BMT to be an either/or. I don’t want to wait 2, 3, 5, 10 or more years for a cure while I potentially watch Kiira suffer. One thing we did learn was that although Kiira’s genetics say she should be in a much worse state, there are RDEB patients with no collagen VII who don’t have nutrition problems (they can eat normal food–many people with EB eat mashed up food) and esophageal strictures, and they may only deal with blisters in certain areas. I’d like to meet one of these, since it seems incredibly prevalent in the EB community, but somehow people remain positive as though these surgeries and procedures the children endure are no big deal. Aside from giving birth, I’ve never been in a hospital–not being able to eat, placing a balloon in my esophagus, going blind, being in a wheelchair, not having use of my hands…these seem like a pretty big deal to me. I guess being an EB parent, these things become the new norm and you have to find the joy in the other things so you can get through these times.

We finally left Stanford around 12:30pm and sat in the car for 6 hours this time, due to traffic, and I almost felt like I was back at day 2 when they told us Kiira had EB–so much fear of the unknown. The long drive gave us plenty of time to ponder what we had been told, although we are not even close to making any decisions. We also began to read the many, many encouraging messages that were sent to us as the news not only went to the Bay Area, but was now traveling around the world! Some articles left out that Kiira had EB, which is important for everyone to know. It’s not something that can be cured with nutrition or vitamins. It’s a genetic condition. Her genes have 2 mutations that tell the protein to stop making Collagen VII, so it will take something significant to remove those mutations (someone else’s DNA through a BMT or a petri dish of her skin where scientists correct it or some other thing we haven’t yet come up with). Read more about RDEB as it relates to Kiira here.

Jason asked me how I feel about being told that Kiira looks great. I told him it makes me want to cry and I don’t know why. I want her to look great. I want all of these prayers to be answered and for her to be cured, but it also scares me that there’s something we can’t see or doctors won’t do anything for her now because she looks good, but when she starts crawling, will we see a huge difference? And that is why in order for me to remain positive, I have to go day by day, but that’s hard when you have to line up your child for an upcoming clinical trial or fight for her medical treatments.

This morning I did have an opportunity to speak to a father who’s son had a BMT 2 years ago at the age of 20. Although they see an improvement in new blisters/injuries, so much damage had already been done to his son (including extensive scarring, webbing of the hands and feet, blistering of the eyes, bone deformity, the loss of nails and enamel on his teeth, just to name a few), so to do a BMT early, before so much injury and pain has occurred, would likely be much more beneficial (which was my argument to the health professionals Kiira has seen). I have also spoken to 3 families who’s babies had the BMT in the last 8 months, and all are seeing positive results, but it’s still too soon to tell how positive.  So yet another huge decision–go with a BMT that isn’t a cure, exclude her from any other trials, and could be very risky to Kiira’s life, but improve her quality of life even by 10% for a couple of years, or wait for something else to come along and in the meantime, just try to protect her and pray her esophagus, mouth, eyes, and hands and feet don’t experience the wrath that most RDEB patients experience. A choice no mother should have to make.

EB Wound Care SuppliesDespite the sorrow EB has brought into our lives, this Christmas we are filled with so many blessings as well. We cannot believe how generous people in this world can be. Sometimes I feel like there is so much bad going on out there in the news (as I’m sure many of you do), but please know that there truly is more good than evil. People have rallied around Kiira, sending their prayers and support, a ton of supplies (I think I need a better organizing system!), and generous donations. We are thrilled that we’ve met the goal to take care of Kiira over the next year. I am still hoping to get support from Ca Children’s Services for supplies, but having this financial burden taken off our plate for awhile is truly a blessing. We want to express our deepest gratitude to all of you. We pray that God will bless you 7x as much as you have given to us this Christmas.

IMG_3529.JPGDespite the new blisters, Kiira still has a smile on her face, so we all should too!

Prayers for this week:

  1. Healing for Kiira
  2. A clear direction for where and when we should treat Kiira

We wish you all a Merry Christmas and pray this season is filled with joy!

Thank you!

We have been absolutely stunned by the love and support we have received because of a local news story by a reporter who was moved by Kiira’s story (, and has now made it’s way around the world. We want to thank you so much for the financial support, kind words, and most of all your prayers. We went to Stanford yesterday and I will post an update about that visit soon, but since it was a long day of meeting with EB specialists and then a very long drive home, we haven’t been able to respond to all of the comments. However, they have been read and are very appreciated.

We hope that all the attention that Kiira’s news story is receiving is bringing more awareness to EB and EB research, which is more of the focus of  Yahoo’s Story. We are in a race against time to keep Kiira’s skin and internal organs from deteriorating, so that is why we are pushing so hard for a cure, as I’m sure all EB families are. Unfortunately some have already lost the fight before a cure was found and my heart aches for those families. I encourage you to check out our EB Resources page–these organizations have been working hard and long to find a way to make EB more tolerable for those suffering from it’s terrible effects.

Some of you have asked to send checks (made out to “Elk Grove Church of Christ” with a Designation: Baby Kiira), supplies, or gifts directly to Kiira. You can send them to this address:

Elk Grove Church of Christ
Attn: Kiira Kinkle
PO Box 1588
Elk Grove, CA 95759

Thank you again and may God bless you all during this Christmas season!

Kiira’s news story

I just got an update that they are planning to air Kiira’s story on the KCRA3 Thursday morning news. We don’t know an exact time, but it might run in the 5AM and 6AM PST news, as well as possibly during the 7-9 AM PST on KQCA My58. (The story will not change–so if you see it once, you will not miss anything in other time slots). It will also be available on after it airs.

2 Months: Holding on to God’s Promise

Kiira 2 monthsKiira 2 months







Kiira turned 2 months old on December 12th. We had a good week, where dressing changes overall went well and we haven’t seen any new blisters. One of the little blisters had a scab on it, and from our understanding of EB, it isn’t very often that the skin scabs. It tends to heal from the outside in. I mentioned that it was “weird” to Jason and he said, “Is it?” I guess not, considering the numerous prayers our sweet Kiira is receiving.

In addition, a ton of my family, including Jason and my older girls were sick, but once again, God had his hands on Kiira and me and we did not get sick. Of course, that meant I was caring for the family, but I was not alone. A sweet family brought us chicken noodle soup and I had other helpers for Kiira’s bandages. We have certainly felt the love!

Another God moment happened last night. We were at Bible Study and Kiira decided to spend the entire time screaming. I was in the other room with her listening to the Christmas stories in the other room when some of the moms came in and talked to me about colic, since Kiira’s screaming is somewhat normal on a nightly basis. I didn’t deal with this with the other girls, but they had with their kids, so I asked for tips. One of them was “white noise”. I put Kiira in her carseat and one of the moms put her phone next to Kiira with her white noise app blaring next to her. Kiira immediately fell asleep. While that alone was great, what was even better, was that when we arrived home, there sat an anonymous gift on our doorstep. We haven’t been opening these mysterious gifts since we wanted to save them for Christmas, but Jason decided to open one of them. Lo and behold, it was a white noise maker machine. Wow, just wow. If God can speak to whoever this mysterious gift giver is and tell them exactly what we need when we need it, He can heal Kiira.

I’ve received a couple messages from people recently who are so confident Kiira will receive this miraculous healing. I can’t explain how encouraging these signs from God are to me. Sure I still have some rough moments, but I have felt more uplifted this week than I have in the last 8 weeks. I have also stopped researching EB, as my mind needs a break. I am just trying to let go and let God, as hard as that may be.

Kiira’s 2-month checkup went well. Although her doctor doesn’t really know much about EB, he thinks she is looking great. She gained nearly 2 lbs in one month (11.1 lbs, 43%ile) and she grew 2″ since birth, so she is now 22.5″. I still see that she is eating well and since I wake her every 3 hours during the day, she is sleeping through at night. We had her audiology appointment today and once again they couldn’t get a good reading, so we’ll return at about 8-months old, but I really have no concerns about her hearing since she smiles at our voices and follows us around. Kiira is also starting to play with toys so it’s really fun seeing her bat at toys on her playmat or bouncer and know that we can now start to entertain her with toys. I also have not been great about giving Kiira baths for fear that I’ll hurt her. However, I finally got brave since she spit up all over herself and really needed one. So Kiira got her first full bath and loved it. We kept the bandages on and did bandage changes immediately following, but it actually went so well that I did it again today. I read how painful baths can be later on, so I’m glad she enjoys it for now and hope we can make it a fun “event” for her for as long as possible.

IMG_3428One thing I didn’t think about with dealing with Kiira was how much it would affect the rest of my family and probably even friends. I spent the last 2 months stuck in my own cloud of self-pity and constant worry. I struggled to see beyond what Kiira needed now and in the future, that I didn’t see how others were also impacted. In some ways it has brought us closer as we rally around Kiira, but in other ways it’s really tearing people up inside and we all try to deal with it in our own way. Writing Kiira’s story is my outlet, and so sometimes you’ll read very raw, difficult posts, because that is what I need to share at that time. Jason and I got our genetic tests back and it confirms Kiira’s results, as Jason and I both carry one of her mutations. This means some day our other girls will want to get tested to see if they are carriers and some of my other family may want to do the same so they know if they are at risk of passing it on. Again, this is another way it has an impact beyond just Kiira.

Kiira smileSometimes I see moms holding their babies so easily as I did with my other 2 and I feel jealous that I can’t do that with Kiira. Sometimes I still wonder why Kiira, why us? I feel like over the last 2 months I’ve been holding back with Kiira–not allowing myself to connect with her for fear I would lose her all too soon, but something changed over the past few days. I see her beautiful smile, hear her laugh and my heart swells with love for her. She tries to “talk” to us and I love our baby conversations. People look at her and tell me she is beautiful and no one can tell by looking that she has anything wrong with her. I try to cherish these compliments, because I fear that someday people will look at her all too differently.

At church one Sunday we sang the Jeremy Camp song, “There Will Be a Day” and it reminded me this life is temporary. We all have aches and pains and illnesses and face death all too often. I don’t want Kiira to suffer and to have EB anymore. I want God to perform a miracle on her. While I wait for that, I will try to remember these words:

God's Promise“I try to hold on to this world with everything I have
But I feel the weight of what it brings, and the hurt that tries to grab
The many trials that seem to never end, His word declares this truth
That we will enter in this rest with wonders anew

But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering

There will be a day with no more tears
No more pain, and no more fears
There will be a day when the burdens of this place
Will be no more, we’ll see Jesus face to face
But until that day, we’ll hold on to you always”

The prayers we can use for this week:

  1. Healing for Kiira
  2. Peace and comfort for all of those who are impacted by Kiira’s diagnosis
  3. Our appointment at Stanford goes well on Friday and we can get some major questions answered and good resources for Kiira.
  4. Our family stays healthy through this cold/flu season
  5. The news piece done on Kiira will bring much needed awareness about EB so that EB research can find a cure for those who are suffering everyday due to EB.

Again, we want to express our sincerest gratitude to all of you who have been praying, sending supplies, bringing food, etc. We are truly humbled, but feel so blessed to have the support of so many of you. We cannot get through this time without your love and support, so thank you!

EB Struggles

This week I started back to work. Although I only work part-time from home, it’s a great break from everything else on my plate. I’ve spent the last few days trying to get a hold of EDD to see about my disability benefits from my pregnancy since I still haven’t received them, but of course you can’t get through by phone, but since it’s hard for me to visit their office in person, I sent them a good, old-fashioned letter. I got a call from Medi-Cal Waiver office telling me I need to apply for SSI for Kiira and it’s best if I go in person. I asked her when I’m supposed to find time to do that, but the woman reminded me that this is a life-long disability and once it’s done and Kiira has SSI, we’ll never have to go again. I feel like it’s a futile exercise though since it’s based on our income and she won’t qualify for benefits. However, before we can be approved for the Medi-Cal waiver, we have to exhaust every other avenue first. She also reminded me to get our genetic testing done (we should have the results this week) so that we don’t bring another EB child into this world since it’s so awful. Thank you–I know it’s awful and even if I had wanted more than 3 kids, trust me, I wouldn’t have another one. Our CA Children’s Services app is also on hold until we get approval from the Medi-Cal waiver. It’s simply amazing how much paperwork, phone calls, and visits are needed in order to get my child much-needed supplies to care for her life-long disability. If a child is born with a condition, it should just be automatic care through either the insurance or the government–both things we’ve paid into for years and never used ourselves or for our other girls!! Through donations, we have supplies and funding to last us several months, which is so amazing, but Kiira will likely need bandaging for years.

Then I got a call from Dr. Tolar’s office (the doctor conducting the bone marrow transplants in Minneapolis) and we have to get approval from Kaiser first, which I assumed, but since our dermatologist isn’t on board with a BMT, I’m afraid we’re going to run into some issues. We just hope she sees it as an opportunity to consult with everyone we can so that when we are ready to move with a treatment for Kiira, we can.

While struggling to get all of this paperwork done, we’re also struggling with Kiira’s skin. My last post showed her improved rash, but the next day it returned and it looks like it will be an on-going issue. Dr. Tolar wrote me an email today complimenting our bandaging and management of infections (since she hasn’t had one since she was in the NICU), but it makes me want to cry, or maybe laugh, because in the last 2 days I see how holding her hand too tight during bandages gives her blood blisters, clipping her nails makes them fall off and tear the skin, the wrong outfit gives her a blister on her chest, and picking her up by her armpits makes multiple blisters there too. Her lip keeps bleeding from her popped blister and her tongue is covered in loose white skin. If these things that we are doing causes her so much injury, what is going to happen when she starts moving and causing her own injuries? Oh never mind–I have seen the pictures. I know what is coming.

Many offer to watch Kiira or help us with her so that I can get a break, but I don’t trust anyone with her, because I don’t even trust myself with her! Sure I can have some nurse come in here and watch Kiira a few days a week, but she’s not familiar with EB or how careful you have to be in handling a child with skin like hers. I know I couldn’t blame someone if they did injure her since I do it on a nearly daily basis, but it would be so hard not to. I feel torn between over-protecting her and wanting to run away and do anything else with my time besides watching my baby deteriorate as time goes on, as I know I have not even come close to seeing the worst on Kiira.

I told Jason the other day that it’s funny how we’ve prayed since she was born that this would go away and when it didn’t, we prayed that it would be the most mild case, and when it wasn’t, we prayed it wouldn’t be the most severe, and I guess it’s not, because some EB kids don’t even make it 7 weeks, but it did end up being RDEB with no collagen VII, which is pretty much one of the worst EB diagnoses possible. My constant prayer is “God, please heal her!”, as I can’t muster up any other words.

People keep ask how I’m doing–I could lie and say that I’m great and everything is under control and I’m happy that God gave Kiira her condition. Or you can keep reading my brutal honesty about I feel for now. I feel like an empty shell, just going through the motions. Time to feed Kiira, time to change her diaper, time to feed the other kids and get them dressed, time to pump, time to work, time to do laundry and dishes and wash the bottles for the millionth time, time to do Kiira’s dressing changes, time for Kiira’s 2-hour evening cry fest and at long last, time for bed–my favorite part of the day. One of the kids is crying, or being funny, but I feel nothing. I don’t feel empathy for them and I don’t feel like laughing with them. I can’t get what I’ve lost or what I have coming in our future off my mind. Sometimes I let myself cry, but usually I just try to feel nothing so I can get through the day. Some days I can keep it together and I start treating Kiira like a “normal” baby and then my actions cause her injury and I get so angry that I have to carry her around as little as possible and when I do, it’s on her pillow. Nursing my other daughters was such a bonding time to me and instead I feel burdened by pumping and feeding Kiira with a bottle because it’s hurting her and if I can’t even cuddle her, I can’t imagine trying to nurse her. People want to help but I don’t want the help, not because I don’t appreciate it, but because I don’t want to have to need it! Such silly things even cross my mind like the fact that she couldn’t wear a pretty dress and headband for Thanksgiving, she probably won’t be able to eat chips when we go out for Mexican food, and she may not even be able to color like her sisters do since her hands will be either be wrapped or too damaged to hold a crayon.

In the hospital I kept crying out “Why?” and I felt this whisper from God saying, “Because I love you,” but I still can’t wrap my mind around how God’s love for us can also burden our hearts so heavily or how is love for Kiira can still allow her to live a life with EB. I don’t know that I’ll ever understand that whisper to me. If I do, I will surely create an updated post! Supposedly we never get more than we can handle, but I am definitely feeling that theory put to the test. After bible study on Monday I told Jason that I hear stories of how parents are up with their children all night because they’re itching or in so much pain that they can’t sleep. I said, “God can’t give that to me too, because I cannot function without sleep.” Ha! That night Kiira was up nearly all night crying, which is a first for her (remember my last post started with how well she was sleeping), and I got about 2 hours of sleep. I guess God was telling me that even without sleep I can survive another day. I won’t make that mistake again… So the next time you ask how I’m doing, I’m probably lying if I tell you I’m fine, but I just don’t want to get into it. The best thing you can do is tell me you’re praying for Kiira, because I truly believe God is listening.

Even with all of these terrible, raw, empty feelings, I’m reminded once again of Kiira’s middle name, “Faith”. I know I have to keep having faith. I know God has a plan in all of this. I still don’t understand why He allows children to be burdened with conditions and diseases to make a point to the rest of us, and I don’t know why He chose us. But I have to keep having faith that a cure is coming and until then, God will help us get through this one day at a time…


7 Weeks Old

Life with Kiira has been getting more routine. She is sleeping well at night (if you can sleep through her baby grunts) once she falls asleep around 10pm. Most days the wrapping goes quickly, but there are still days when she is not in the mood. After we gave a few of her fingers new blisters after a rough day of wrapping, we decided that it’s better to not do it that day, or at least at that time, than to wrap and cause more injury. Kiira’s lip keeps getting blistered and then it will heal and blister again from the bottle. Hopefully it will toughen up enough that we won’t continue to see the blisters here. Kiira also endured 2 weeks of a rash mostly on her head, shoulders and trunk, but it has finally cleared up. I’m realizing how sensitive her skin is and how long it takes to heal with EB. Some of the rash bumps blistered, but even they’re gone! We are back to lubricating her skin multiple times a day to keep her skin clear. It’s amazing how dry her skin feels without the ointments on her face, which makes her itchy and then rashy. Just another EB side effect.

We are scheduled to go to the Stanford Clinic on December 19th. We will meet with several specialists, such as a dermatologist, physical and occupational therapists, and a nutritionist. We’re hoping to get a lot of questions answered and get more advice about Kiira’s future and possible treatments.

As I have mentioned, we are possibly seeking a bone marrow transplant for Kiira based on her genetic results (if she even qualifies). I know some have reservations about it because of the high risks it imposes. When I talked to Kiira’s dermatologist about it, she felt it was too risky, but told me that we don’t have to worry about her hands and feet fusing until she is about 2. Kiira wouldn’t need an esophageal dilation until she is about 5 and the earliest skin cancer appearances in EB patients is at about 8 years old. Hm, and I want my baby to go through all of those things, plus numerous infections, extensive scarring, nutritional issues, internal damage, physical developmental delay, daily pain and medication and more? While we continue to pray for miraculous healing for Kiira so that she wouldn’t have to go through a BMT or a life with EB, we know we also need to be proactive. We don’t even know if Kiira is a candidate for BMT, but with 2 mutations that result in no collagen VII production, we want to follow up on any possibility that can give Kiira a better quality of life.

Below is a slideshow of Kiira’s progress from birth, some reinjuries, and healing at 6 weeks.

Although I have many things to be sad and angry about, I also have so many to be thankful for. I am so thankful for our friends and family and people I don’t even know that have helped entertain our girls through babysitting or gifts, sent clothes and supplies for Kiira, and the many donations to Kiira’s fund for continued help with supplies and nursing care which we are getting in the upcoming weeks. Others have helped with setting up this website, our Facebook page, our Amazon wish list page, and the ability to provide tax-deductible donations, making special clothing, and so much more. We seriously couldn’t make it through this time without the support of so many of you. I am truly thankful for everyone who has shown us God’s love through giving of time, prayer and resources.