blessed.

 

 

Baits, Balls, and Clays

Today we had the immense pleasure of attending an Oilman’s fundraiser in honor of The Nephcure Foundation in east Texas.  It was the first in a series of fishing, golf, and clay shooting tournaments.  Josh and I are truly blown away by their generosity and hospitality to our family and rare kidney disease research.  It’s hard to describe what it was like to met two other individuals whose lives are effected by FSGS and Nephrotic Syndrome.  It’s like coming home, like they are family right away, I’ve really never experienced anything like it.  I met Kelly over the phone right after Olivia’s diagnosis and she has been a huge support to us.  Her 7 year old daughter has been battling FSGS for 4 years and has gone through a transplant only to have the disease attack her new kidney.  Today we got to met in person and we asked her a thousand questions and she helped entertain the twins!  

 

 

 

 

 

Nephcure had a GIANT poster made to give a face to the disease for those attending the fundraiser.  Olivia studied her swollen picture intently then said “Mama owies”, then in typical Olivia style tried to climb it.  We love this girl!!  

 

 

 

 

 

Kelly and I had a chance to share our stories with everyone, and we spent time with the tournament organizers who have lived with Nephrotic Syndrome and it’s awful side effects for years.  It was a really special chance to get to know them a little and I know it meant a lot to all of us to fight this battle together.  They raised and donated $7000 in Olivia’s name to Nephcure and were so incredibly kind to us.  Full hearts here tonight!!!

Olivia and Mr. Chad, both Nephrotic Syndrome patients:

Family Portraits

Don’t you love Christmas time when you open dozens of perfectly posed, dressed, photographed smiling family photos in the mail?  But we all know what actually goes into GETTING that one perfect shot don’t we!!  We lay coordinating clothes out on the bed and obsess over each piece trying to make the whole thing come together in our heads.  We try to time everything JUST right, with the weather, the lighting, the naps and meal times and last weeks toddler forehead bruise.  We bring our best kid bribes in our pocket, rush around to get everyone put together and in the car and become completely undignified and silly to get the kids to take “just one more.”  I’m sure you can relate at least in part!  But unless you are doing your own portraits like we do, you may never get to experience the outtakes.  We have some truly awesome outtakes and some great family portraits I haven’t been able to legally share until now, I hope you enjoy!  

I framed this set and gave it to Josh for father’s day last year and made him cry!  You’d probably never notice I photoshoped out Livy’s feeding tube in her nose and that Jaden’s hand is holding up her Y.

Our first family of 7 shoot actually went pretty well, the twins weren’t quite to the toddler running all over the place phase yet and we had marshmallows handy.

This is my all time favorite outtake, just use your imagination to figure out what’s going on:

You can’t script this fantasticness:

This next family shoot was a bit more difficult, we had just moved and the 3 youngest were in a serious mood.  They knew what we were doing and were trying hard to not cooperate.  But we kept it short and sweet and got some favorites, and it didn’t hurt that their Aunt was playing peek-a-boo in the grass between shots!

Find the missing child . . .

I told you we get a little crazy during family photos!

And a few more 5 kid favorites:

Beautiful Things

Beautiful Things: An Adoption Story from Brooks bigsby on Vimeo.

Attachment in Adoption: Part 3

Phew, this as been an emotional exercise to write about our adoption path!  Someone made a comment on yesterday’s post that made me think about what the adoptive family needs and how you can support them.  More than anything else, I think adoptive parents need to feel like they are not alone in their unique struggles and that there is nothing wrong with wrestling with the trials they face.  I believe most people don’t understand the enormity of pain adoptive parents experience as they directly position themselves to bare the brunt of their child’s brokenness.  Every ounce of mad, sad, lost, and scared is acted out upon the parent as the child journeys toward healing.  Most folks don’t want to hear about our challenges as adoptive parents, they think we’re being negative or overreacting, or ungrateful and not finding joy in the new blessing we have.  People often think, oh my kid does that too, but they have no comprehension of the excessive level of that behavior we live with, or the hidden reason behind it.  I can tell you that us foster/adoptive parents feel every bit ecstatic over our newly placed, long awaited for child, and every bit struggling with the realities that necessitated that child’s placement with us  to begin with.  Adoptive parents are usually okay with that tension, but the world usually is not.  Adoptive parents need each other, to just be in the presence of someone who gets it is incredibly powerful.  If you are new to this journey, don’t underestimate your need for a community that’s been where you’re going.  This is one of the reasons I speak so openly about this topic, because if the world and our orphaned children and their forever families and the people close to them are to be successful, we NEED adoption truth.

So the twin thing.  If there was one comment I got/get besides “wow, you’ve got your hands full” it’s “oooooo twins, I ALWAYS wanted twins!!!”  It’s okay, I understand, I always wanted them too.  And though the joys of having twins, or of growing up with your biological sister/bff in an adoptive family, are too many to count and constantly leave me in awe, can I just tell you that being a twin has been a really rough break for Tali and Livy as I pick up in part three of our adoption story when we landed in Texas.  

We came to our new home and life a lot more broken than I realized at the time.  Remember that colicky phase I described when we first brought them home?  Ya that came back again.  It was compounded by Olivia’s health struggles as she had an undiagnosed secondary disease which was basically like the stomach flu all the time, and she was on steroids which are famous for their negative effect on mood and behavior, and she was not eating much which triggered trauma from past severe neglect, and she still struggled with sensory issues from her drug exposure.  She was baby on my hip all the time or screaming, and even then sometimes still screaming.  Talia was sullen and mean or superficially charming and the most controlling toddler on earth.  You know where control comes from don’t you?  It comes from fear and a lack of trust.  It says, if I don’t hurry up and be big enough to control my out-of-control life I won’t survive.  And you’ve never seen control issues until you meet a traumatized controlling child.  I can hardly describe its intensity that invaded every waking breath of hers right down to controlling us through the incredibly amount she talked without any purpose, the minuet angle at which she was buckled in her car seat, and the speed at which she allowed us to put her shirt on.  It was unreal.  Josh and I aren’t these incredibly perfect parents either who were completely unfazed and always patient with these difficult, inconvenient, and exhausting behaviors.  Loving them well required us to get over ourselves, and to stop taking the behaviors personally (which is way, way harder to actually do than to talk about doing), but you won’t come out the same person you went into it as.   Did you know that orphans don’t need perfect parents?  What they need is real families to live in.  I’m getting to the happy part soon, promise!

Two months after we had moved Josh started working again, which was fantastic for everyone but Talia who was strongly attached to him.  I remember thinking we were in trouble and needed help (again) and sought out an attachment therapist (again.)  But it was the holiday season and things were crazy so we put it off till after the new year.  My parents came for several weeks to visit over Christmas and Talia thought that meant I was leaving again (can you blame her?)  She would go to my dad and snuggle up to him all day and refuse to let me hold her.  Olivia’s attachment was pretty solid at that point, which meant that she refused to go to anyone but me, but Talia’s the one that needed to go nowhere but with me, however with two sometimes there was nothing I could do about it.  My choices, particularly whenever I left the house, were to insist a toddler who does not want to be held do so, and not allow the screaming one who only wants to be held to do so.  It wasn’t a pretty picture, and even though people in Texas are a bit more polite about not starring at the scene it would make, it was unmanageable for all of us and I felt like I was letting my boys down by leaving early from every fun thing we tried to do.  (Cue mommy guilt here!)

Another attachment strategy I used with Talia that was extremely helpful that I still use was to make her world very, very small.  After a week of this clinginess to my dad and refusal to see me, I insisted that she stay by my side or in my arms ALL DAY LONG.  This was not easy or convenient but it slowly rescued our relationship.  A year I will never forget finally came to a close, and with it extended family returned home and Olivia’s secondary disease was diagnosed via intestinal scope/biopsy.  We removed the 10 foods that were making her feel so sick and she was like a totally new child.  She played a ran around and laughed all the time now.  Talia saw her opportunity and instead of me insisting she stay close, she insisted on staying close and in my arms all day long.  She may have been 2, but emotionally she had a lot of catch up to do.  Oh my word how QUICKLY that child turned around once her world was stable and we employed a few basic attachment strategies.  We never needed that therapist.  Talia likes mommy now, in fact she prefers her mommy to anyone else, she snuggles her little nose in as close as possible to mommy in the rocking chair (another great tool for attachment) and this morning at breakfast she told me that she missed me yesterday when I left to get my hair cut.  I had told her I what I was doing, and when I was coming back, and she trusted me this time around.  Having legally become their parents also gave us more freedom to give them much needed boundaries.  Adopted kids need boundaries as much, and actually more than biological kids do.  It’s a path toward trust, and a carefree childhood not dominated by their disastrous attempts at control.

There are still lingering attachment/control issues with Talia, she’s not yet completely caught up in emotional age and I have to watch that part of her like a hawk.  Olivia still struggles with sensory related meltdowns, medical complications, and likely a heavy dose of ADHD and they both have food hoarding/control/panic problems, but I feel like I can write all this and tie it up with a pretty bow now.  6 weeks ago we finalized their adoption and I truly sense we are in a new season in my soul.  A season of healing, of surrender, forgiveness, and a little more humility.

What is remarkable about our story, and I hope what you glean from it is not how awful and difficult it all was, because a large portion of that was caused by medical and life circumstances I hope you will never face.  What I hope you take away is the incredible ability of the human spirit to heal, and the prized position an adoptive parent has to be involved in that miracle.  I hope you gained some practical tools if that’s what you needed, and I pray your heart is stirred toward supporting or participating in an adoption and that you received insight into the realties faced by humanities most vulnerable little ones and the people who care for them.

 

Attachment in Adoption: Part 2

Picking up were I left off in yesterday’s post, I realized a very important ingredient to the attachment processes I completely forgot to mention.  We didn’t let anyone but us hold, feed, change, or care for the twins for a very long while.  They had played musical caregiver and needed a season of exclusivity.  Children are so amazing in the complexity of copping skills they can develop even as babies.  Our girls would walk right up to a total stranger, or a friend or extended family member and want to be held.  Though it’s cute, and charming, and an automatic response in us big people to help, feed, or hold a child when they cue for it and their mommy sure looks like she has her hands full and could use the help, in the child from a hard place it can be damaging.  They have learned, unfortunately, that they are not safe and so from a place of fear they will “mommy shop” even if they DO have an adoptive mommy that they love.  Trust me if you don’t know the root of this behavior, it looks adorable, “awwww, she wants me to pick her up”, “she’s so friendly and outgoing”, “what a sweet little one.”  But they are not being sweet, they are afraid, they do not trust that their new parental relationship is permanent based on past losses so they want to position themselves to be cared for when they move again in the future.  This is a really hard one for people who are close to an adoption, it feels counter intuitive.  If you are near to an adoption, my biggest advice for you would be to not feed, hold, or care for that child EVEN when they ask for it, even when their parent looks like they could really use the help, even when you think it’s been long enough now, and even when it hurts.  That child cannot build a non-fear based relational attachment with friends or extended family until they have a solid, unshakable attachment with their primary caregiver.

For Olivia today, almost 18 months after placement this is a non-issue, Talia on the other hand, still really struggles with this.  She ADORES her mommy, but something inside her still does not totally trust that I won’t leave her.  This is the place in our little attachment story that diverges radically from what most people’s journey would be.  Normally I would say, things slowly improved in our attachment, and we soon learned how to thrive together.  There may have been a few lingering issues but nothing major.  That’s what our story probably would have said and I could wrap this whole thing up in quick happy ending.  But that’s not what happened, and even though most will never experience what we did next in their adoption journey, I think it speaks to the attachment process in profound ways.  Because what Talia went through, and how that shaped her attachment very much mirrors what a child with 8 foster homes might feel like, or a never ending string of caregivers at their orphanage.

I look back now at pictures and I see that those first 4 months home, though they were painfully challenging, were such a gift from God.  The twins had only been home about 5 weeks, and Olivia did this strange child morphing thing where Josh and I would say, she looks so different today, doesn’t she?  And we would both agree, but we couldn’t pinpoint why.  Even their foster mom thought she had changed so much.  A few weeks later and we started seeing some swelling in her eyes, and thought, that’s strange, it must be allergies.  

The clinic agreed and she was treated for allergies, till one day the swelling moved to her whole body.  I still remember riding in an ambulance in the very middle of the night, laid out on a stretcher with her on my lap on our way from one ER to the Children’s hospital, and the medic asked “have they told you what her diagnosis is yet?”  I said no, only that her tests were all off and he told me she had something he had never heard of before called Nephrotic Syndrome.  I said it a few times just to try and remember the words.  I had no idea that what should have been a straight forward childhood disease she’d outgrow was actually a rare form that would cause a fight for her very life the following months, a lifelong battle with medical complications, and a merry-go-round of caregivers for Talia.  Aren’t you glad sometimes that God doesn’t warn you beforehand?  I sure am, and I’m grateful the future is in his hands and not mine and I’m glad that he chose me for this because I never would have volunteered for it and I never would have known how strong He could be in my weakest moments and how much blessing I could experience from these two precious, complicated, challenging, stunning little lives.   But good grief they were precious!!!!!!

Olivia was on her third hospital stay, during Easter in fact, and Talia and her three older brothers had rotated between friends, people they had never met before who had volunteered to help out, me being home like normal then leaving with Olivia again, and Josh taking sick leave when we couldn’t find a friend to watch them while he worked.  It had been 6 months since the girls had been home, 6 months since they had last seen their birthmother, and the courts decided that birth mom should have one last, 2 hour long final goodbye visit with the twins as the hearing for termination of parental rights was just around the corner.  I sat in that crowded office, toys and snacks scattered about playing with the girls like they were just on some fun little trip when their birth mom walked in.  She was sobbing, and the moment those girls laid eyes on her they froze their toddler activity and locked eyes with her movements, stiffening their bodies and backing away.  Olivia grabbed her snack and buried herself behind me on the couch, Talia was playing on the floor and had scampered under the closest chair and they continued this throughout the whole visit, using the social workers us human shields after I left the room.  I had never, and never since have seen them react that way to someone.  They were 18 months old.  It had been 6 months since they’d seen her, and conventional wisdom says they were way too young to remember or be influenced by that relationship that took place primarily during supervised visits at CPS as babies.  Kids are so way smarter then we give them credit for sometimes.  After she left I went in the room and both girls ran to me wanting to be held.  Talia started hitting me in the face, she was telling me she was really mad that I had left her in a place where she didn’t feel safe.  Memories and early relationships can be a powerful influence on kids even when it doesn’t make sense to us grown ups.

During Olivia’s fourth, fifth, and sixth hospitalizations, the longest lasting 5 weeks, my parents left their home as missionaries in Fiji to live with us so we could go on without life completely crashing in.  It was so good for the kids to have more consistency in caregivers when Josh and I couldn’t be there.  My dad has a very strong resemblance to the twins foster father, and Talia latched herself onto him as if the world was ending (because her’s kind of was.)  When I’d see her at the hospital, or come home for a visit when Olivia was in a comma and I felt like I could leave, she was mad.  She was so mad at me.  She saw her foster mom again and was mad at her too.  She would run away from me and wouldn’t let me hold her.  I can’t help but cry as I write this, my heart is so broken for what she had to go through.  She couldn’t trust anyone to stick around, even the good ones kept coming and going again.  I hurt something fierce for her.

By July, when they were 19-20 months old, Olivia’s health crisis was settling down, my parents had gone home, but Josh had lost his job a few weeks earlier so in September we moved across the country to be near family, where there was a great employment economy and daddy had a shot at finding another job.  On the list of top most stressful things you can do in life is moving.  I wouldn’t suggest it with a recently placed child, at all.  But some of these things can’t be helped.  I remember having a very sweet goodbye dinner with some close friends just before we left California and Talia was daddy shopping again.  She’d go right up to the different men and want to be held, and when we insisted she be held by her dad she would throw a fit.  Someone was still pretty mad, but now mostly at her dad, I think she had sort of given up on the mommies in her life.  For now that was okay, because daddy was home all the time and Olivia needed near constant care.

To be continued . . .

Attachment in Adoption: Part 1

We had a great weekend!  Saturday was sports in the morning, then church that evening.  Sunday we spent a lazy morning at the park as a family then went to a church event that evening.  Truly such a blessed few days.  Monday and Tuesday were a bit more difficult for one of our twins, Talia, BECAUSE of the weekend.  You see Talia (who calls herself Tali-bug in third person) continues to have struggles with attachment, and over the weekend she was in childcare at church twice, which is once more than normal.  There is a major back story in that child’s heart I think is invisible to the world, but Josh and I know very well.  I want to tell that story because I have a heart for orphans, and adoption, obviously, and because I think it’s crucial for anyone who has ever remotely thought about adopting or who knows someone who’s fostering/adopting to understand the core identity many orphaned children live with.

I’ve observed that attachment struggles in children fall on a continuum, from, easiest adoption EVER with a seamless transition, to the child exhibits such intense behavior from a place of unfathomable hurt they spend their childhood bouncing unsuccessfully from home to home and are broken more each time for it, to everything in between.  Things that most commonly impact the extent of the child’s attachment struggles are age, personality, number of siblings, race, number of moves/caregivers, abuse, neglect, drug exposure, and the compacity of their adoptive family.  That being said, you can’t put a formula on a child’s soul.  An older child can come from an orphanage situation and thrive, while a tiny toddler can come from a stable foster home and that family can struggle just to get through each day for years on end.  I speak of real families I know, and I know the ones who got their kids younger and have experienced no issues at all.  We are not that family.

There are bookshelves full of masterful works written on this topic, and I simply want to share our experience, because it’s the only one I’m really qualified to write on, and because I think it paints a very real picture that can be helpful for anyone considering, or close to an adoption.

Attachment begins in the womb, in case you didn’t know.  Things like domestic violence, maternal stress and mental illness, drugs and alcohol, and the mother’s feelings about the pregnancy are all shared chemically with the unborn child and begin to effect the way they interpret the world around them.  And even in infancy, things like “well at least they won’t remember” are unhelpful here.  Though the baby may not have a cognitive memory of starving or being left untouched in a dirty diaper and crying for days, every part of their being is dramatically effected and can be seen in behaviors like food hoarding and extreme clinginess or distrust years later, even if the harm was done before 6 months of age.  I can confidently say these are all things our daughters experienced before they were removed by the state at 3 months of age, weighing a collective 12 lbs.

I wish I could say that their troubles ended there, but unfortunately factors effecting their strength and ability to attach continued for years.  Even though they stayed in the best foster home on planet earth (seriously it was) until they came to live with us 9 months later, they had ongoing court mandated visits twice a week with their birth mother and to say those visits were traumatic and outrageous would be an understatement.  And even though they had a good attachment with their foster parents, the system the lived in, from therapist, doctors, hospitalizations, sitters, CASA’s, social workers, and these strange new people call adoptive parents visiting them for months was too much for little babies who had already had more than their fair share of upset.  Talia especially, who has a naturally more cautious personality, and because of her strong resemblance to her birth mom received the brunt of a lot of forced attention, was not super happy about her situation in life.

I remember when we first brought the girls home, those first few weeks how they cried.  Oh they cried and cried and cried, for hours on end.  They were so very broken inside.  One time I couldn’t get Talia calmed so I took her upstairs and swaddled her in a blanket, and rocked her while she screamed.  I looked and thought she had finally calmed down but she was frozen.  Her eyes were open but frozen, as was her body.  She had checked out, it all just hurt too badly to stay present in reality.  It’s called an absence seizure and can be triggered by trauma and was terrifying to watch, but thankfully it never happened again.  It’s incredible the amount of psychological pain a 12 month old can experience.

Once the initial shock and trauma had worn off (because even though moving to an adoptive home is the best thing for a child in the long term, it’s still another devastating loss to them), we saw a new pattern emerge.  It’s a well documented phenomenon in orphaned/foster/adoptive children in that their emotional age does not match their chronological age.  I can still hear myself telling Josh that they were like colicky babies.  We could calm them now, but it was an ongoing, constant effort we exerted to keep them that way.  If I went to fold laundry or do dishes, they fell apart.  They wanted to be held, while standing up, BOTH of them.  We had a newborn with colic once, and that’s exactly what he wanted, to be held, as we stood up and bounced him, and if the magic combo stopped he would scream again (God sure prepared us well!)  So this is what I did, I accepted a stunted social life that did not revolve around myself, lived in a messy house and I took all 45 lbs of those girls and loved them exactly where they were, like colicky newborns and I did this for hours each day:

You wouldn’t believe the stares and comments I got in public with two big babies strapped on to my body, it was like people were watching a train wreck or something and couldn’t look away.  I bottle fed them for waaaaaay longer than your “supposed to” and I let them walk around with a graham cracker in one hand all day because they needed to know there was always food.  I also carried on the tradition of good sleeping habits their foster mom had taught them because those girls, and us, needed to sleep well to survive.  Physically, they were toddlers, but emotionally, they were stuck in infancy and the best thing we could do was treat them us such, and walk through all the phases a second time.  I still can’t believe how crazy that time was now that I think back on it and write about it.  Thank GOODNESS that was just a season!!!!!!  

Liam is 5 and mom figures out what to do with all the pictures!

After years of trying to figure out what to actually do with the digital pictures I have, I think I’ve finally worked it out.  There are so many great options for digital photo books out there, but for me I found something to keep it simple that I can do as I go.  I’ve been making 12 x 12 story boards in photoshop and saving them, with a double layout for a single event.  That way I can easily print them and stick them in a scrapbook for our family to enjoy.  These are Liam’s birthday story boards (imagine white boarders around them and you get the idea! )  Also the birthday crown I made from 4 sheets of felt for $1 in under 10 minutes (thank you pinterest!)

Time flies

Today is my little Liam’s 5th birthday.  Yesterday we went on a date to a tiny airfield a few minutes from our home and just played.  We brought some dress up stuff, one of his most favorite pastimes, took some pictures, and I held him in my lap on the grass on the most perfect April evening as we watched the planes take off together.  I was magical.  I am treasuring up in my heart that brief little window of time, because it will very soon fly away.  So bitter sweet, him turning 5.  As we walked together to the car he said unprompted “thank you mommy so much for bringing me here!”  That boy, and these photographs are precious to this mom’s soul.

Just a few notes on the photography side.  I guess I’m sort of a slave driver when it comes to taking my family’s pictures.  I learned something new yesterday as I intentionally took it really easy and made it fun.  I know that’s kind of an obvious lesson, but it’s hard for me to turn off the photographers brain and all the 100′s of ways to compose things and just let it be.  But I did it, and I think not only did it make our time together sweet and memorable for my son, but I think it shows in the pictures.  Secondly we both had a lot of fun with the props and location in this one.  Planning ahead and going the extra mile ahead of time really worked well, and I didn’t spend much on it either.  The cute little blue airplane was borrowed from a friend (and the first time I saw Liam playing with it was when this whole thing got dreamed up in my head for him) and all of his outfit was bought at thrift stores for a few dollars a piece.  Lastly I know I can take the photography thing to a bit more of an obsessive level than most moms and I just want to encourage you that we all have something that makes us tick, some hobby we love, some creative outlet, some sort of gifting and none of us are the same nor should we be!!  Momblogs can be a great source of destructive comparison, to what someone else is doing that you are not, don’t fall into that trap!  Just go and be exactly who God called you to be, because THAT is beautiful.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Nephcure Walk and what is FSGS?

PLEASE TAKE A MOMENT TO READ THIS, it would mean so much to us! Our daughter Olivia has a horrible kidney disease called FSGS. It causes severe swelling throughout the body, high blood pressure and cholesterol, protein in the urine and very low levels of albumin in the blood. All these symptoms put the person at great risk for deadly blood clots, seizures, and what happened to our daughter where the swelling got so bad her lungs collapsed and she spent 3 weeks fighting for life on a high pressure ventilator and dialysis. These symptoms are what make up the disease Nephrotic Syndrome. FSGS is a rare form of Nephrotic Syndrome which causes scaring to the kidneys, is much more difficult to control with medication, and eventually leads to kidney failure. Half the time FSGS reoccurs within hours in the newly transplanted kidney and the fight begins all over again. Last week I asked her Nephrologist if we can try a different drug to keep her in remission. The current med she’s on is working but has caused a secondary condition called Eosinophilic Colitis which is a combination of severe food allergies and symptoms like having the stomach flu ALL the time, which is a large part of why she is fed mostly via feeding tube on special formula. He looked at me and said “She has FSGS right? Well there aren’t options for her, they either aren’t effective or they are too dangerous.” There are currently NO FDA APPROVED DRUGS to treat Nephrotic Syndrome and FSGS. FSGS is the second most common cause of pediatric kidney failure. These patients lives are filled with hospitalizations, surgeries, medications with their side effects, IV drugs, being chained to a dialysis machine and/or feeding pump, and feeling tired, nauseous, and in pain much of the time. We want a cure, but today we would settle for treatment options and an improved quality of life for our daughter and her future. You can help!!!!!!! Nephcure foundation is committed exclusively to finding treatments and a cure for these diseases and to supporting and networking their patients. They are holding a walk in Grand Prairie, TX on June 1st to raise funding for research and to support the families. You can walk with us, donate to Nephcure in Olivia’s name, and if you know of or have a business that would be interested in sponsoring the walk PLEASE let me know!!!!!!