From blindess to sight

At a time when there is so much negativity in the world it is important to remember all the miracles that happen on a daily basis. I’d like to share one such miracle. This month we want to celebrate the Nelson family – Derek, Desiray, Mackenzie and Elliana.

A little background: Desiray was only 23 years old when their first child Mackenzie was born. Mackenzie had a stroke in utero and as a result her cortex did not develop. She was diagnosed with a rare disorder called Hydranencephaly. The parents were told their baby would not survive past the age of two.

Can you imagine the anguish these young parents felt? But they didn’t give up. The next few years they met with numerous professionals looking for answers. But all they were given was a list of what their child would never be able to do. But under Desiray’s very sweet soft-spoken nature was a core of steel. She was not willing to accept the prognosis and began the search that ultimately brought them to REACH.

We saw Mackenzie for the first time in August 2008, just a couple weeks short of her 2nd birthday. The flight alone from South Dakota to Medford was a major undertaking. The Nelsons faced many obstacles beyond the normal nightmares of flying with children these days, including flight attendants who did not understand that Mackenzie couldn’t sit on her own and a missed flight in San Francisco. These young parents had our utmost respect before we even met them!

[callout title=From Blindness to Sight…]”The therapists were astonished with Mackenzie’s progress and abilities. They showed Mackenzie several pictures on flash cards then asked her to choose between 2 pictures, and as we would expect, Mackenzie got them all right.”[/callout]

We fell in love with Mackenzie at first sight. What a little trooper! When we evaluated Mackenzie we found that she was functionally blind, could hear sounds, had no understanding of spoken language and could only make a very limited number of sounds. Her response to pain was inappropriate and her body was so tight that she would cry in pain when placed on her tummy. Her arms were tight and held close to her body and could not be lifted above her head. Mackenzie’s hands were always clenched in a tight fist. Seizures, health, eating and sleeping were all big problems.

We went over our evaluation and explained what we needed to do to get her to the next level. Desiray and Derek were thrilled that we focused on Mackenzie’s abilities rather than her disabilities. We designed a developmental program based on our findings and taught the Nelsons how to carry it out at home. Despite the fact that both parents work full time, with the help of Desiray’s parents and volunteers they have been able to carry out the full program!

Since August 2008, the Nelsons have brought McKenzie to us every 4 months for re-evaluation. So what has changed in Mackenzie’s life since then? I’m sure you’re very curious to find out! She is much looser and can now easily lift her arms over her head. She enjoys spending time on her tummy and can crawl down an inclined plane. Now her response to pain is perfect! She can follow simple instructions and loves to feel soft blankets and hold on to her stuffed toys. Mackenzie is a very happy child who knows what is going on around her and has the most contagious laughter. Her health is excellent, she very rarely has seizures, she eats well and sleeping is no longer a problem.

Mackenzie is about to begin kindergarten. Recently, as part of the entrance process, she was evaluated by the Children’s Hospital in Sioux Falls. Here is what Desiray reported to us: “The therapists were astonished with Mackenzie’s progress and abilities. They showed Mackenzie several pictures on flash cards then asked her to choose between 2 pictures, and as we would expect, Mackenzie got them all right.” Yes, Mackenzie not only sees details at near point but she can also recognize pictures!

Desiray went on to say, “Mackenzie evaluated above what was expected of her by the therapists and I was a proud momma!” Desiray went in expecting to once again stand up for her daughter and fight for the opportunity to show what Mackenzie could do. But this time was different. Mackenzie performed and the therapists ended up being believers! Mackenzie has progressed in all areas of ability! What an achievement!

We also often see enormous growth and change in the parents of our children. They live with their child’s problems on a daily basis but choose to focus on what can be done to improve their child’s life. This is true of the Nelsons and especially of Desiray. She is still a soft-spoken person, but don’t mess with this mother when it comes to her children!

Desiray and Derek teach us all important lessons in persistence, determination, and a tremendous appreciation of the miracle of human development and potential!

20 Responses to From blindess to sight

  1. WOW!!!
    You had touch so many families, including ours. This is a great miracle of love and persistence.

    • Thanks Ruth! You are right about the miracle of love and persistence. It is also a good example of what can be accomplished when parents believe in their children’s potential! The progress in Mackenzie also demonstrates that all children have the potential to function far better than they do! We would love to get an update on Amanda. Please send us an email.

  2. I loved reading this! We were at our first REACH appointment the at same time Mackenzie came for her first appointment, and have seen her a few times since. What an incredible little girl, and an amazing mom and dad! Way to go Mackenzie! Way to go Desiray and Derek! (Rosie still has her little bear that Mackenzie brought her one visit. 🙂 )

    • That is right Carrie! I forgot you started program together! You have both stuck with it and done a superb job with your children. You would be amazed how different Mackenzie looks! We will have to try to schedule both of you together again! Nice to hear that Rosie still has the bear Mackenzie gave her.

    • Thank you Carrie! We are pretty proud of her! She started Kindergarten yesterday – a pretty big step for her considering that we were told she wouldn’t live to see the day. It was a bittersweet moment having the opportunity to take her to the school yesterday and introduce her to the entire elementary school and tell her amazing story…all without any tears! Thank you Charlie and Conceicao for helping to build my courage. : ) Give miss Rosalie hugs from us in SD and tell her we are super proud of her great progress as well!

    • Thanks Ridhi! I am glad you were inspired by this post. That is the reason we wanted to share her story with everyone. She is proof that when parents believe in their child’s potential and are given the tools to develop it miracles can happen!

  3. this should be a lesson to never give up on your children It is a good lesson for us all. Good job Mackenzie

  4. Such an amazing accomplishment!
    In Sept 1980, I had a little girl born with the same condition. Unfortunately she died 5 days later. I’m so happy for this little girl and her family. Kuddos to ALL of you!

    • So sorry about your little girl Lois! Maybe she is one of Mackenzie’s angels! Thanks for your encouraging comments.

    • Lois I’m sorry for your loss. The news truly was devastating, however 6 years later, I don’t think I would change it for the world. I truly believe that everything happens for a reason – each day I begin to understand more and more why we were chosen to be her parents. She has brought so much light into our lives, as well as the lives of so many other people. Mackenzie has truly taught me the meaning of a miracle and shown that when one truly believes anything is possible. She has definitely defied the odds in so many ways! Shes the reason that we found REACH – and I will never be able to repay them for the hope they instilled back into our lives, and helped us to see for ourselves that nothing is impossible and how truly incredible the brain is!

  5. It is so wonderful to see the power of parental love,the comfort of friendship and the neverending mercy of the Lord. Her story is so beautiful,and the faith of her parents is an example to us all. God is good.

  6. Mackenzie is our grandaughter, and we just celebrated her 6th birthday today!! How amazingly incredible!! She is our precious lil angel!! We love you to the moon and back!! God is good!! Love g’ma and g’pa!! 🙂

  7. I haven’t been through your battle but I do know the feelings you go through fighting for the life of your child! My heart & prayers go to you!!! You are an amazing mom!!

    • You are right Sandy, Desiray is an amazing mom and Charlie and I are so blessed to work with her and so many other great mothers that truly put their children’s needs above anything else. Thanks for your encouragement!

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