Four Months Post Treatment

What a busy boy Lane has been since returning home from China. About four months ago, Lane was not your typical 17-month old boy. Being born blind with Septo-optic Dysplasia and Optic Nerve Hypoplasia really hindered his mental and physical development. There were many things that Lane could not do because of his condition. He was very timid. It took him so long just to sit up on his own. He did not have strong neck muscles and constantly had his head resting on his chest. People used to say to me, “Oh, he must be so sleepy.” Not knowing that he was blind and didn’t have any reason to lift his head or look at anything. Eating food with textures was always a struggle, too. Nearly all of the food we tried to feed him would end up on his bib along with a lot of spit. I can’t say that we blame him though- we can only imagine that not being able to see what is going into your mouth is a big deal. Lane would only take a bottle to eat and at his age, he should have been holding a bottle around 12 months ago. Lane did not crawl or walk either, despite our efforts. He wasn’t strong enough to stand for even just a few minutes and preferred to sit all the time. He could speak a handful of words but usually only if we repeated the word over and over to him to get him to talk. Lane had very minimal interaction with others and only played with toys around him that he was familiar with. He never tried reaching or venturing out. Lane acted like a newborn baby only he was 17 months old. When we arrived in China, Lane’s development was around the age of a 6 month old baby- if that in some areas. Lane would just sit slumped over and relied on us for everything. Although Lane would make progress, such as sidestepping in his crib, these developments would occur months and months later in Lane than in children who can learn by using their eyes.

Oh how things have changed!

These past couple of months have been exciting and joyous! It was as if someone flipped the light bulb switch ON in Lane. He instantly became a new kid while we were in China receiving treatment! We began noticing small changes in his personality. The first thing we noticed was that Lane began to play differently right away. He started throwing his toys and making more noises. He was so energetic and lively! Our boy became alive inside. He played more, laughed and smiled more. Overall, he was happier, stronger and more confident in himself. Almost immediately after we got home, Lane started to crawl. I can’t tell you how happy we were to see him crawl after all this time. He began to venture out and explore the area around him. After that, he began to hold his own bottle and feed himself! This was a huge deal for us since we have been doing it for him and trying to get him to do it on his own. He never had any interest in doing it himself before. He used to just drop his hands and cry for us to hold the bottle up to his mouth. But, not anymore! We haven’t fed him a bottle in over 2 months!! He does it all by himself like a big boy now. He now has added cereal to his diet and is progressively getting better with baby food. We can actively play with him and engage him now. He follows commands and has learned how to speak more. He hums to music and moves his mouth when he hears words. When we tell him to stand, he stands. When we say, Lane, come here, he will come to us. He can stand without assistance and is on the verge of walking. He has developed an independent personality. Lane’s cognitive skills have increased greatly. When he wants me, he calls Momma and when I tell him that I am there, he tells me what he wants. Like ‘eat’ or ‘up’ for me to pick him up. All within the first 8 weeks! It’s amazing to see so much progress in such a short period of time and there is so much more that I haven’t mentioned. Lane is now acting his age and has been doing so for months now! We are so happy with the results that the stem cells have shown us so far and it has only been a few months! We love to play with him post treatment because he actually plays with us now! To see him engaged, interactive and acting like a typical toddler makes us happier than you could know. Not only are we so proud of him for catching up on all his milestones but so are Lane’s therapists! Each time his therapists come over, they are blown away by all the progress that he has made so quickly! Lane hopped on the progression train in China and we don’t see any end in sight! As far as vision goes, we have not “seen” any major improvements yet. It is probably because Lane has so many hypoplastic (underdeveloped) areas in his brain and it is still early on after treatment. Along with being blind, Lane has some brain abnormalities. The stem cells are working on the areas that are most important, and in Lane’s case, there are many areas the stem cells have to choose from. Lane is also missing many optic nerves that connect from the eyes to the back of the brain. The stem cells will have to grow them to give him any sight. On another note, since we have returned home, Lane has grown inches! We know his pituitary gland (master hormone gland in the brain that is also underdeveloped) is getting help because he is definitely getting all his hormones and has grown so much. Thank goodness for that!! –that is a blessing in itself! He is such a big boy now. We don’t want to speak too soon and say that Lane has developed or not developed in vision because we will have concrete data to support his progress after he has a follow-up VEP (test that measures how much light gets to the back of the brain) and MRI. Lane’s ophthalmologist has stated that any changes on the VEP test will be because of his treatment. We will have these tests done later this year, after the stem cells have reached their full potential and have done all they can do to help him. They will continue to live and work on Lane up until a year or so after his treatment.

I am happy to report that the little boy from Poland, Victor, is now seeing. I can only imagine how thrilled and happy his parents are that their boy can actually see things now. I know a few children that also went to China a few weeks before us and they are now seeing. It’s miraculous to see a ‘black-blind’ child go from seeing nothing to seeing lights and grabbing at toys. I’m sure it’s a whole new world now to all of these kids who have recently gained vision. I know stem cells are the future for my son’s vision, too. If it can happen for others with ONH/SOD, then it can still happen for our Lane.They have already changed and improved his quality of life!

Thank you everyone for your continued support. It has been such a relief knowing that we have been able to give Lane his only treatment option and what a relief that he is finally catching up on his development. It means the world to us that you all care so much about him and that you want to see him doing well. We are so blessed to have you all in our life. There simply are not words to express all our feelings. Stay tuned for more updates and Happy Holidays everyone! ~ The Yochum’s

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Leaving on a Jet Plane… We Will Miss You Qingdao!

As of yesterday, Lane received his last IV treatment of adult stem cells. He did marvelously and was a happy boy the whole time he sat on his Daddy’s lap. Lane and Tim laughed and listened to music together the whole half hour. The stem cells are projected to work on Lane for the next year or so. Beike says most people with Lane’s condition don’t see visual improvement in the 18 days that they are here but do so when they return home. The stem cells need time to mature and work on the areas that are underdeveloped in Lane’s head. The good news is that we’ve seen some positive changes in Lane already- such as his pupils dilating and less Nystagmus (wiggling of the eyes). We’ve also noticed his increased energy and interaction with us. He is such a playful little boy now and you can barely tell that he is blind. His personality is really coming out and he is starting to develop in areas that a normal child with vision would. We look forward to what the stem cells will do for Lane in the months to come.

Being in Qingdao with Beike has really been an eye opening, amazing experience for us. We have been touched by so many people who have come and by their desire to help themselves and/or children. We’ve been able to witness some incredible, unexplainable things happen around us. People who are visually impaired are seeing better and more. People who have lost feeling in their limbs are now feeling. Quadriplegics who need a feeding tube are gaining weight on their own. Children who couldn’t feel their legs are now walking. It’s truly miraculous. Stem cells offer so much hope for those who are disabled and I recommend it to anyone who has been told that their incurable disease cannot be helped. We couldn’t be more thankful and blessed to have given Lane this opportunity to improve his quality of life. The journey was definitely well worth all our efforts to get him here and we hope to be back soon for more treatment. It will only raise Lane’s chances at the most vision possible and an easier way of living. Whether it takes us 10 years to raise the funds again, we will do so for Lane.

All our bags are packed and we are ready to return home to our princess, Mackenzie. Oh how we have missed her. I have promised that the next trip we make to China for Lane- she will be coming along also! Our plane leaves Qingdao at 2:50pm and then we fly to Seoul, South Korea to then jump on the 14 hour flight over Japan and Canada all the way to Atlanta. From Atlanta we fly to Houston and then get to drive 3 ½ hours home to San Antonio. Whew, I already feel exhausted! Lol! When we get home, we will have the weekend to rest and then we all start school on Monday- Lane included!

Since we are taking off from China we would like to once again say thank you to all those who have made this trip possible for Lane. You are our heroes. All your efforts and prayers have made this incredible experience even more meaningful for us. In addition to thanking everyone in the states, my mother-in-law and I put together some small goodie bags for all the staff here in the hospital that has helped Lane. We gave our nurses, translators and doctors a small goodie bag representing San Antonio and the USA! We also made Beike a banner so that they will always remember how much we appreciated their awesome hospitality and efforts to make our treatment and stay a memorable one. They hung it out in the hallway next to where our room has been. We just love Beike and sing their praises! It’s very bittersweet having to leave. Like I said, we pray to be back again for Lane and can’t wait to see their faces again. We’ve made some lifelong friends here and plan to keep in touch with them over the years. They are like family to us and we will keep up with their progress as well.

We will continue to keep you updated on Lane’s progress once we get back home and your continued support will always be appreciated!

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Two Weeks Down… One More Week To Go…

This morning we woke up to go to therapy just like every other morning. Lane has become accustomed to his daily schedule and has adapted really well. He has become so good about not touching his head during therapy and his patience has gotten a lot better! We’ve noticed that Lane has a lot more energy than he did before we came and when he sleeps he sleeps longer and sounder. Since we’ve been here it’s like the switch has flipped with Lane. He is a lot more active and interactive with us. It’s almost like he is a different boy. He can now high five Tim and likes to throw his toys out of his crib. This is very out of the norm for Lane because usually he’ll just play in an area with the toys around him and not venture out too much. He seems to be opening up, coming out of his shell and trying new things which make us very happy to see!
After therapy this morning, during Skyping with Mackenzie, Lane’s nurses came in to put the port in his foot for his 3rd IV treatment this afternoon. He did so well and the nurses are so awesome because they put it in so quickly! They are really great at their jobs and they know their business! Around 4pm, Lane got his 3rd IV treatment and he did wonderful as usual! The whole process took maybe 30-45 minutes and we listened to some good ‘ol country music on my phone while we waited for the drip to finish. My boy loves music just like his Momma! He received around 100 million adult stem cells in our sitting. In the room with us was a little Romanian boy named Victor. He also has SOD and he is 2 years old. We just adore him because he’s so sweet and loving. Tuesday afternoon, after Lane’s 2nd treatment, he developed a fever and heat rash. We ran blood work on him to make sure everything was ok and it was. His blood results showed no infection. So as a precaution, we will give him some Tylenol tonight before bed just in case he gets another fever. Fever is the most common side effect of the treatment and so far today, Lane has not had another one. After treatment we decided to go eat dinner at the local Pizza Hut. It’s funny because Pizza Hut is like fine dining here. Dinner was good because after 2 weeks of eating real Chinese food and McDonald’s we were really craving something close to home!

Typhoon Muifa that came our way was downgraded to a tropical storm by the time it hit Qingdao. We actually only got a little bit of rain. Those silly weather forecasters! Earlier this week we went back to the Jimmo Rd market where we bought a few souvenirs to bring home. I bought Mackenzie some cool Chinese Princess Legos and some more Barbies. We like taking the drive to downtown because Qingdao is such a beautiful city to see. Everywhere you go you see manicured landscaping and pretty flowers! The city also randomly pops fireworks during the day and night. It’s cool to look out our window to see the show! Below is a picture of the view from our hospital room. Tim and I also had a couples massage this week. It was totally awesome! It cost us $20 for 2 whole body massages for 100 minutes! What a steal and let me tell you… those little Chinese woman sure know how to make you feel good! Tim and I couldn’t help but laugh when they started to stand on our backs and work us with their knees and such! It was hands down the best massage I’ve ever had and I’m pretty sure that I will never find a cheaper massage in the states! I think I’m definitely going to have another one before we leave next Thursday.

A lot of new families came in this week. There are some from Brazil, Texas, Chicago, Tampa and Hawaii. The family from Texas is here with their son, Jaden, who also has SOD and he is 2 1/2 years old. They have returned for their 2nd time because after returning home from their trip last year, they saw amazing improvements in their son’s vision and motor skills from the stem cells. It has really been a great experience for us so far. We have made some great memories and some lifelong friends! Tomorrow night everyone wants to go Karaoke again so it looks like I might not let the mic down again. Haha, if you know me well, you know that I LOVE to sing my heart out! Lots of love to our family back home and we will see you all very soon! Until our next post…

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Beginning Week Two In China With Lane:

Since we arrived in Qingdao, I have been paying close attention to Lane’s pupils when we are in the therapy room. Every morning and afternoon we have therapy in a room thats back wall is all windows. It’s neat because we are on the 8th floor of the hospital and you can see out over China. The room is always very bright because of all the sunlight shining in (as shown below). We started therapy last Tuesday and I observed that Lane’s pupils remained very large throughout his session. On Wednesday morning I observed the same thing. Lane’s pupils were large (trying to let light in) and me and Tim’s pupils were small because our eyes could see plenty of light. Wednesday afternoon was Lane’s 1st (long anticipated) stem cell treatment and so we didn’t have therapy that afternoon. The following day, Thursday, I observed that his pupils were slightly smaller and they stayed that way during our morning and afternoon sessions. Friday was the same. Slightly smaller than they were on Tuesday and Wednesday while me and Tim’s pupils were very small. Over the weekend we did not have therapy because those are our days off. Today, while in therapy this morning, I noticed that Lane’s pupils were very small, just like me and Tim’s! I told the doctor what I had observed and he said that this was a good sign. So, I am happy to report that with only one stem cell packet, Lane has made some progress with the dilation of his eyes.

This morning after acupuncture and electric wave therapy, the nurses came into our room and prepped Lane’s foot for his 2nd IV treatment today. They will leave the port in his foot for 24 hours just in case they need to give him medicine for any reason. Today, Lane received 2 stem cell packets, around 100 million stem cells! Go baby go, work baby work!

There are many other families here from around the world also receiveing adult stem cell treatment. Let me share a few positive stories with you that I have seen while we have been here. There is a little girl named Avah here with Spina Bifida and she is 2 or 3 years old. She couldn’t feel her legs upon arrival. She would get around by dragging her little legs behind her. During her acupunture therapy, her parents and the therapist distract her with a drawing board while they put the acupuncture needles in her legs to increase the blood flow. Last week, while she couldn’t see what was being done to her legs, she started to cry and grabbed her leg during the procedure! The doctor believes that it is nerve regeneration and that is what is causing her to have feeling in them! Amazing, right!? This gave me the goose bumps to hear! Also, there is a woman here from France who became blind after she had Meningitis nine years ago. She is completely blind and lost feeling in two of her fingers. She has had only one treatment and now she can feel her two fingers! She jokingly laughed when we spoke about the feeling in her fingers because although she is happy about feeling her fingers again, she would much rather have her vision back! She still has many adult stem cell treatments left to go so we are hopeful that the stem cells are working on her optic nerves as well!

Over the weekend we did some sight seeing and shopping downtown. We went to Jimmo Rd. (a large flea market) and bought a few souveniers to take home. You can buy practically anything there for dirt cheap and you get to haggle with them for a great price! They have everything from real Rolex watches to Louis Vuitton purses! We got to see The Yellow Sea and also visited The Zhanshan Temple, where we saw monks and people praying to Buda. It was beautiful there! Saturday night, we went to a Karoake place with other families from the VIP ward and we all hung out. It was fun to kick back and have a good time with the other families. Pretty sure our singing wasn’t too great since the music was so loud but who cares, we had a good time cutting loose. On Sunday, we took it easy and went to the RT Mart to get some more food since Tropical Storm Muifa is headed our way. Last night we made it a movie night and played Gin Rummy til we passed out. This week will be just like last week only Lane gets his 3rd treatment on Friday afternoon. Today, I posted a few pictures of Lane on the bulletin board full of patients who have made the journey in hopes of a better quality of life. We have made our mark, Lane has been here! Since our little Mackenzie could not make the trip with us, Buzz and Lotszo took her place and as you can see from the photo below, they say hi! I will try my best to keep everyone posted!
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First Stem Cell Treatment

Today is the third day we have been here, the second full day we have been at the hospital. The day started early (we wake up around 6:30am here). Breakfast is available from places like McDonalds or if you are really feeling hungry you can load up and head to the Holiday Inn for a buffet breakfast, although I have heard it is expensive.

We got ready and took Lane to his occupational therapy at 9. Owen is our therapist. He is a cool guy. When Lane gets fussy and starts crying he always wants to hold him to try to settle him down and he gives him a little kiss during his afternoon massage. The accupuncture is still an issue for Lane. He doesn’t cry the entire time but he doesn’t like it at all when they have to put the needles in his head (what 18-month old does?). He stayed pretty calm today but Lauren and I have to constantly sing to him to keep him calm. He doesn’t seem to mind the electic wave therapy very much. They just put a strap around his head and a couple of plastic things underneath it on his forehead. He was great for about fifteen of the twenty minutes today and he only got fussy when the child on the next table next to us started screaming bloody murder. That is really the only thing that will make him start crying once Lauren and I have calmed him down. Both days so far he has started crying really only because of other kids crying (and I mean CRYING!) around him.

Owen is very nice and speaks a tiny bit of english so it makes things easier not needing a translator in the mornings. Forest is also a therapist that works with Owen but he is a doctor also. They are both cool. Lauren and I figured out that everything goes much smoother if we give Lane a bottle during his morning therapy.

After we got back to our room Dr. Wang, Lane’s attending physician, told us that Lane will be getting six IV treatments only, not any of the other types of treatments (lumbar puncture, etc.) Because of Lane’s blood type, he will recieve umbilical cord stem cells not umbilical cord blood stem cells. We were told that there isn’t much of a difference. Dr. Wang is also cool, he laughs a lot. About noon here Lane likes a nap. We wanted him to be well rested today because it was his first stem cell treatment! This is what we have been working so hard for. It seems so long ago when we decided to take Lane to China for these treatments and now the day has finally arrived.

Linda, the head nurse (also cool), came and got us around three and took us upstairs to the treatment room. Only one of us was allowed to go in today because the room was so crowded. Lauren, Lane and the nurse were gone about 45 minutes and when they came back Lane was in a great mood. I’m not sure why I expected him to be tired and groggy but he was exactly the opposite of that. They put the port for the IV in his foot and wrapped it up good and then put a sock over it so Lane couldn’t mess with it. It’s like he doesn’t even notice it’s there. Lauren said other than wanting to move around a bit Lane did great. That’s my boy!

Since Lane is only doing IV treatments there are no limitations on what he can do or eat before and after. If he were receiving lumbar punctures he would not be able to eat for six hours before it and then would have to lay flat on his back for six hours after the treatment. That would be pretty rough on Lane so everything worked out in that regard.

We got ready and headed across the street to what used to be a huge, four-story shopping center. It still has a handful of stores in it but it’s much closer to being a ghost town than a shopping center. It’s so extravagant that it has a mini amusement part in the middle of it with a large rollercoaster, rides, stages for shows, and everything else. But there was no one there! The rollercoaster only ran once while we were there and there were only two people on it. People still stare at us everywhere we go. Some smile and some don’t.

And even though the building is literally across the street it’s still an adventure to get to because of the way people get around here. There are lots of taxis and people on mopeds and bikes and they go wherever they want, whenever they want. There are no stop lights here, people just merge through intersections, often just going right in front of traffic that is about to hit them. People honk their horns here all the time. When you walk outside you immediately hear people honking at other people, but it isn’t an angry, road rage type of honk that people have back in the states, here it is simply a get out of the way honk.

The people here at the hospital are great. We have met people from Romania, the UK, Poland, Brazil, and other people from the US. There are four American families here right now, including us but since the only languages the translators speak is Chinese and English almost everyone can speak to you in some type of broken English, even the nice girls working the registers at McDonalds.

We took a walk around the block the hospital is on and saw the local community center (which is almost as big as the hospital we are staying in), and the local park where people play soccer and basketball. I am going to wear my San Antonio Spurs shirt tomorrow and hope that someone notices it’s an NBA shirt and says something to me about Yao Ming, at which point I will say, “No, no, no. Not Yao Ming, Tim Duncan”!
Tomorrow is a normal day without a stem cell treatment, which means in the afternoon Lane will have fire cupping and massage again.

That’s all for today, it’s getting late here in China, until tomorrow…….

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Day 2 in Qingdao:

Today is the day we start blogging about our trip. It’s our 2nd day in China! Yesterday we arrived in Qingdao and we were picked up by a very nice man named, Jason (our translator and guide). The flights were long and stressful, Lane was missing his bed and pillow. We did a lot of singing, bouncing and sshhing to keep him calm. No worries, though. He has caught up on his rest now! When we arrived at the hospital, Jason took us to our room and got us situated with the hospital. Lane’s doctor came in soon after and did an initial evaluation of Lane. After we showered and got cleaned up from the long trip, Jason took us to the RT Mart (Walmart, Chinese Style) to get food and supplies that we will need while we are here. We get to come and go from the hospital as we please. Many places are in walking distance and there are taxis everywhere to take us wherever we wish to go. Everywhere we have been people have come up to Lane and try to talk and play with him. It’s sweet. We are like “celebraties” here. Too bad our Chinese isn’t so good. haha, The Chinese are very friendly and kind people.

Today we woke up after a long night’s rest and Skyped with our princess at home. So glad to hear that everything is well there and it made us feel good to see her. We love you, Mackenzie!! After Skyping, the nurses came in to draw blood from Lane to check his hormones and such. Lane was not a happy camper about it! He didn’t like having his arms and legs held down. He wasn’t in pain, I think he was just scared more than anything. You have to remember that being a blind baby means that you only hear, smell and touch and you rely on others for help. Not knowing what was happening was hard for him. He also had to fast before they drew blood, so he was hungry! We quickly gave him a bottle as soon as the nurses were done and he was a happy baby boy again! Afterwards, we were taken downstairs to have a EKG and chest x-ray. All is well there and it of course was painless and quick! We are VIP patients here and they take that seriously! When we arrived for our tests, they pushed many in line out of the way for Lane to be seen right way. There was no waiting! Wish we got this kind of treatment at home. ;) Around 9am, Lane started his therapy which he will have Monday through Friday. We started with acupunture on his forhead and head. He did not like having the procedure (which took maybe 1 minute) but we sang Twinkle Twinkle Little Star to him and he fell asleep. Next, he had electric wave therapy above his eyes. He stayed asleep during the whole procedure and we continued to sing to him. Later this afternoon, around 1:30pm (China time), Lane will have a massage around his eyes and head and he will also have Fire Cupping done. The Chinese strongly believe that these therapys and physical therapy help aid the stem cells in their work. I think they are right! It’s like energizing the body or stimulation. Tomorrow will be Lane’s first IV treatment of stem cells. I can’t wait to get those miracle cells in his system and I pray they let him see light! It may take some time to see improvement since the stem cells need time to mature but it’s all well worth it to us.

We will be here for about 3 weeks and we plan to keep you all updated. I know there are many inquisitive family members, friends and ONH parents who are following our progess so if you have any questions, please feel free to email us. We have a lot of “down time” when Lane is not having therapy or treatment so it’s no bother. We are about 11 hours ahead of Central time in the states. Looks like our McDonald’s just arrived for lunch… yes, McDonalds delivers here and it tastes just like it does at home! ….and it’s even cheaper!

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We Made It To China!

Before anything is mentioned about the trip, Lauren and I want to pause and again thank everyone who has gotten us this far. It has not been an easy journey but all of you have made it considerably easier than we envisioned it. We cannot thank you enough. The outpouring of love and caring for Lane has been beyond anything that we could have ever hoped for. Again, thank you. Know that even though Lauren and I are taking Lane to China we know that your hearts travel with us. We will never be able to articulate how deeply Lauren and I thank you for helping Lane be given the chance at sight. Thank you.

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T-minus 18 days…

Just finished our interview with Grace White from Fox News! It will air sometime next week before we leave. 18 days and counting until we leave for treatment in China! We are still raising funds and have t-shirts and wristbands to sell if anyone would like one. Please keep the prayers coming for our little Lane, they are more than appreciated! ♥

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Lane’s Texas Hold ‘em Tournament and Casino Night Benefit

What an amazing night! With the help of everyone who was present at Lane’s Benefit, we were able to raise around $19,000 for Lane’s treatment in China!! To all who came out to support Lane, we want to say from the very bottom of our hearts, thank you so very much for all that you have done for us. Without your help and support we would not be where we are right now in fundraising! You are our hereos! We are now just under $9,000 away from our goal! Can you believe it!?

A special thank you to, Gerald and Patti Hoffman, Gerald’s Casino Parties, Anthony Pedrotti and Pedrotti’s Northwind Ranch. We will never forget what you have done for us. You all really know how to put on a great party and you are truly amazing people. Also, to all our donors, we don’t have the words to express our gratitude. We love you all and can’t wait for Lane to be able to SEE your support as well! God Bless!

Tim, Lauren, Lane and Mackenzie

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Great Day SA interview:

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