Meet Zariah! Although she may be small, she is definitely mighty and has made so many milestones recently! To learn more about Zariah's adoption story, her love for the song Some Things Never Change, and her family's mission to raise awareness, read the interview down below.
1. To start off, can you tell me a little bit about Zariah?
Zariah is 1.5 years old, and was adopted on April 6th! She has schizencephaly which causes abnormal slits/clefts in the brain, arthrogryposis which is characterized by stiff joints, moebius syndrome which causes difficulty in controlling eye movements and facial expressions, cerebral palsy, has no function of her arms, laryngomalacia which affects her voice box, and is 100% g tube fed. However, while Zariah might be small, she is definitely mighty and captures all of our hearts! Zariah has been such a blessing in our lives and I cannot be prouder to be her mom.
2. What was your journey like with adopting Zariah?
I'm a NICU nurse and I met Zariah February of last year. Her parents never visited, and it soon became clear that she was most likely going into foster care due to neglect. I really wanted to take Zariah home, but my husband was a little hesitant, especially since he never met her and he wasn't allowed to meet her until after we agreed to foster her. However, he finally did come around and said that he thought we should go along on this journey as well. The moment my husband saw Zariah for the first time, he started tearing up and he knew he was meant to be her dad. So from the point on we were all in! It took a few months before we could take her home from the NICU because we had to get home health set up for her, but we got to take her home in October. Then in December her biological mother signed consent for the adoption as well as her biological dad in January. On April 6th, one day short of being a foster care for a year, Zariah became ours!
3. What are Zariah’s hobbies? What is her personality like?
She loves listening and dancing to music! You can always find her watching Frozen 2 on repeat and singing along to the song Some Things Never Change. She is also a big fan of cuddles and never gets tired of them :)
4. What are some of Zariah’s best strengths?
She is cognitively not that far behind where she should be, and she has learned to do so many things with her feet! We are so proud of Zariah and she has made so much progress since we first fostered her.
5. What resources have been helpful for you as Zariah's parent?
The early intervention program in my state has been such a lifesaver! They have given us so many therapy resources which really helped a lot with Zariah's progress.
Meet Julian! He is the kindest boy you would ever meet, always rescuing little bugs from the sidewalk and making sure everyone is included. He has loved dinosaurs ever since he was little, and dreams to go to university to study paleontology! To learn more about Julian's incredible milestone of giving injections to himself, his family's involvement in Rare Disease fundraisers, and more, read the interview conducted with Julian's mother below.
1. To start off, can you tell me a little bit about Julian?
Julian is 13 years old...I can’t believe I can say that now, I have a teenager! He has a rare genetic auto inflammatory disease called Tumor Necrosis Factor Receptor Associated Periodic Syndrome (or TRAPS), a genetic heart condition called Long QT Syndrome, and a blood disorder called Thrombophilia. He was diagnosed with TRAPS in 2015 after years of investigations for his “bad growing pains” and high fevers. He was then diagnosed with Long QT when he lost consciousness after going on an amusement ride at a festival and Thrombophilia was later discovered incidentally during a routine blood test. His episodes last anywhere from 1 week to a month, but we are grateful that his daily injections have lessened the severity of his episodes and remain hopeful for specialized treatment options to become available to us in the future.
2. What would surprise people the most about Julian?
It might sound strange but a lot of people are surprised by how chronically ill Julian actually is. They are shocked when they find out he has one disease, let alone several! I think a lot of people with invisible illness can relate to this. Julian very rarely has symptoms that can be seen on the outside, at least to the untrained eye. However, he lives with a high degree of pain daily and uses many mobility aids simply to get by, such as a wheelchair when his joints cannot support him or are locked in place.
3. What are Julian's interests? What is his personality like?
Julian has been dinosaur obsessed since he was a toddler and is still just as interested in them today! His focus is on going to university to study paleontology and that was only fueled further by being granted a Starlight Wish where he got to visit a real dig site.
He has the softest personality and is kind to everyone he meets, right down to rescuing little bugs off the sidewalk. Julian can be shy but once you get to know him he’ll do anything to make you smile!
4. What are some of Julian's best strengths?
Julian is the strongest person I know. He has dealt with so much from such a young age and he takes it all in his stride without complaining even once. He is stoic almost to a fault, as his doctors are always reminding him that it’s ok to let them know when the pain is too much. He always thinks of others before himself and has a great love for the environment and animals.
5. What is a recent milestone of Julian?
Julian has been having daily injections in his stomach since 2015 and the medication is very painful, like fire under the skin he says. Because of this I’ve given him the three injections every day, but a few weeks ago he decided he needed to take control of his diseases and started giving them to himself. It was a huge milestone for us and he couldn’t wait to tell his doctors!
6. What are some of your favorite resources as a parent?
When I first got the news about Julian’s conditions I was overwhelmed like so many other parents in our situation are, so I spent hours reading articles online and honestly I scared myself a little bit! There is so much information out there it can be easy to feel like it’s all just too much. Then I found little Facebook groups specially formed for parents with children who have the same conditions as Julian. It was a godsend! Talking to other families who are living what we are living, who have seen the same medical teams, tried the same meds, etc., really helped me sort through all the information and feel less alone.
7. How do you advocate for Julian?
I advocate for Julian by sharing his story on social media and connecting with other parents who are feeling a little lost at the start of their journeys. I participate in Rare Disease Day fundraisers and work with organizations to spread the word about the need for funding, for treatments and for proper diagnosis. I also think advocating for our children means showing up for them every day and helping them be heard by their doctors and other treating staff.
8. What is the most rewarding aspect of raising Julian?
Truthfully, the most rewarding part of raising Julian is that I just get to be with him every day and watch him grow into this beautiful young man, both inside and out.
9. What advice would you like to give other families who have a child/children with special needs?
You and your children are stronger than you sometimes feel. I know it’s daunting to look at the long road ahead of you but you both have it in you even when you feel like you’re running on empty. And also cuddles always help. Seriously, go give your little one a hug right now. It makes everything better!
10. What has your son taught you?
I truly feel blessed to be Julian’s mother. I learn so much from watching how he handles life’s hurdles, and I am constantly trying to follow his example. He doesn’t get stuck on past bad experiences and he doesn’t worry about the future. He stays focused and happy in the present and doesn’t stress about things that are outside of his control. That’s something I’m really trying to work on.
Tumor Necrosis Factor Receptor Associated Periodic Syndrome: A condition characterized by recurrent episodes of fever
Long QT Syndrome: A heart rhythm condition that can lead to fast heartbeats
Thrombophilia: A condition that increases the risk of blood clots
Starlight Wish (https://www.starlight.org.au/): An organization which gives children with critical condition(s) a life-changing wish.
Meet Lochlyn! She is truly the sassiest and most determined little girl, and one can find her watching Frozen 2 (and ONLY Frozen 2) and stealing her brother's toy cars. Read on to learn more about Lochlyn's love for Legos, her most recent accomplishment of learning how to walk, and more!
1. To start off, can you tell me a little bit about Lochlyn?
Lochlyn is 20 months and was diagnosed with Achondroplasia Dwarfism, which results in short stature, the day after she was born. Doctors first told us she would pass away shortly after birth due to a fatal form of Skeletal Dysplasia; however, as days went by we were shown time and time again that Lochlyn had every intention of fighting and thriving! Fast forward to now, Lochlyn's healthy and loves to make others days a little brighter through her funny and sassy personality :)
2. What are Lochlyn's interests? What is her personality like?
Lochlyn has her moments like other toddlers, but she really is the happiest and most laid back girl! She loves watching Frozen 2 (and ONLY Frozen 2), playing with her Duplo Legos, and stealing her brother’s cars.
3. What is a recent accomplishment/milestone of Lochlyn?
She just started walking!! She’s been working so hard for the last few months and her hard work paid off. She has been so motivated through this whole process and her face just lights up as whenever she takes her steps.
4. What are some of Lochlyn's best strengths?
She is truly the most determined child I’ve met. If she wants it, she’ll figure out how to get it and always proves she deserves the same as everyone else. She doesn’t let anything or anyone stop her!
5. How do you advocate for your daughter?
I call us “quiet advocates” because we only use our platform and Instagram account to share her life. Our hopes in sharing her daily life is that others will see her in a positive light and that her life is worth living. Even though she may have her differences, she deserves to find acceptance amongst everyone!
6. What are some of your favorite resources as a parent?
My most used and favorite resource is other parents! We’ve made so many friends along the way and it’s reassuring to talk to other POLPs (parent of little person) about their experiences and building such an amazing community. From them, I can learn, speak to, and lean on someone that truly understands.
7. What have you learned from raising Lochlyn?
I feel so grateful to be Lochlyn's mother. She has taught me to use my voice, to stand my ground, and trust my intuition. She is the prime example of cherishing whats happening in the present and that the doctors aren’t always right.