Hopping for MECP2 - A trip to Alfie Lund
Another trip to England was planned for the bank-holiday-weekend from the 1st to the 3rd of Mai. It has really got a very special one.
Have you ever heard about the MECP2-duplication-syndrom? Probably not! And to change this I flew to Manchester with about 70 football-scarfs and 40 jerseys, T-Shirts, pullover and flags. Let me explain what the one thing has to do with the other:
About 40 minutes by car, north of Manchester the 10.000-people village Burscough is located, where seven years old Alfie Lund lives. Alfie suffers from so MECP2-duplication-syndrom. This is a genetic defect, which shows the following symptoms: Alfie can´t walk and can´t talk, he cannot dress himself and must be feed. He shows autistic-like behaviors, for example hand flapping and rocking. He has severe learn difficulty and is more vulnerable for pneumonia and its accompaniments as healthy kids. All in all you can say: it’s a very ugly thing! From child to child these and other symptoms are more or less pronounced. Good is: the disorder is very rare. But this is also bad on the other hand. Beause the awareness this disorder gets is not enough. To make it curable or prenatal preventable someday, there must be more research. And to reach more awareness Mark Lund, who is Alfie’s father, had the idea to collect football-memorabilia from all clubs all over the world, to knot them to the longest football-memorabilia-chain ever in the world. He began with it in late summer 2014. Since then the chain grew constantly to more than two miles. Also pieces of the chain – the whole chain is not transportable - were displayed to public at 20 football-matches allover England in the last year. By these opportunities the spectators were able to donate both: further items for the chain and money. The money is for the Alfie-Lund-Fund, the organization behind everything. The money is spend for special equipment Alfie needs for his all-day-living and also for other affected families, organized by MECP2-UK.
In September 2014 Mark had advertised for the Alfie Lund Fund in the Facebook group European football weekends and had asked for donations for the memorabilia chain. I liked this idea immediately, because I like actions, where football-fans of different clubs can run something together to show that there are some things more important than football. These actions matter more than any feigned RESPECT-Banner of UEFA or impelled “Say-no-to-racism” Spots of FIFA. That’s why I donated a scarf and a t-shirt. With these items I sent some written words and actually for me the matter has resolved itself. A few days later I got a PN from Mark, my few words would have been “touching” and he was very happy about my donation. A friendship-request followed. We stayed sporadically in contact. As I was going to a Manchester City game on 6th of December, I asked if the chain would be displayed anywhere on the Sunday after. It was not, but Mark offered to come to Manchester to meet up and make some pics of me, Alfie and the chain. We arranged it. Unfortunately Alfie got ill, so we had to cancel our date at short notice. Nevertheless the story had gripped me, so I wrote a little article for our stadium-flyer “Nordkurve AktUL”. I also made postings on Facebook again and again, asking for donations for the chain, but without success. In early February I asked Bayer Leverkusen´s fan-responsible, if it is possible to get a jersey with the player´s signatures and an article to a match-program. Both were realized very quickly, so I was able to send an official Bayer Leverkusen parcel to Bursgough. A few weeks later, an article with a photo of Alfie in front of a Bayer-flag and the jersey on him, was in the BayArena Magazin versus Stuttgart.
A bit later I booked flight from cologne to Manchester from the 1st to the 3rd of May in appointment with Mark. It was my goal to take a huge bag packed with scarfs, jerseys, t-shirts and flags with me. But my appeals for donations kept unheard. Two weeks before my flight I started to write to people personally on Facebook and told them about Alfie and the chain. Now, the things began to roll… With the help of a friend I could organize, that an article about me, Alfie and the chain was published in the Leverkusen-part of the Rheinische Post, a big paper in North-Rhine-Westphalia.
Another good friend, Lars Burgwinkel, shared my appeal on the Facebook site of his physiotherapy-office “Therapieburg” and he also asked for donations. He put a box into his office just for that. Through all these things we could collect all in all the 70 scarfs and 40 “tops” and flags. That was so much, that it blew my bag, why I had to please my parents to bring me a bigger suitcase. Germanwings had agreed to transport the suitcase for free, as it was for a good cause. Thanks a lot for that! Now it could begin.
Friday, first of May 2015
My parents and Daniel came in the morning. My parents came to bring me the suitcase, Daniel to bring me a last-minute donation. Also the bigger suitcase we were only able to close very troublesome. Daniel said it could be short to the 23 Kilo maximum. Mum and Dad then took me to the station and from there I went by S-Bahn to the Köln-Bonn-Airport. The suitcase was bugging, as it had only a short holder, so it hit into my hoes many times what again begun it to totter. I checked in that monster immediately, of course, and got a little shock, when the display showed 24, 7 Kilo. If the guy could see that this was “THAT” piece of luggage, because of a notice or so, or if he did not fucked me up because he was just nice – I don´t know. Anyhow the suitcase became its MAN-sticker and disappeared on secret ways into the aircraft.
Already on the train to the airport I had spotted a guy with a fat-wreck-records shirt and a Lagwagon bag. Good band! Later, on the plane that guy sat next to me and we started a conversation. He introduced himself as Rob, he lives in cologne, likes Punk Rock and beer, so we drunk two of it. He was filled with wonder about the reason of my journey and more than ever when I told him, that I was on the way to Burscogh. He himself was on the way to a wedding in the closest village. Small –the world is! On the way to the passport-control he told me about a good punk-rock-pub in cologne called “em drügge pitter”. “Yeah, that’s a good shop!” the guy in the queue behind us mentioned. That guy also knew that pub. And my friend Kilian has liked it on Facebook too. Did I point out, that the world is small? Rob and I are Facebook-friend know, so I am sure we will meet for some beers there soon.
In Manchester at the airport Mark was already waiting for me to pick me up. On the 40-minute ride we chatted about this and that, but mostly about Alfie. I knew everybody only from pics or Facebook-writing. So did not know so well what I could expect. Does Alfie know I am coming? Will he greet me? If yes how? Will he understand me, if I tell him something? And so on…
At the Lund´s home I at last met Alfie personally. He gazed at me, apparently aphetic, and did not react on me. He was teetering in his chair and kept expressionless. But I think this is very normal. I also met Rachel, who is Alfies mum and Marks wife. She welcomed me very friendly and asked prompt if I wanna have a drink. I took a tee with milk, as it should be in England. Now Mark showed his house, my room and all the football-items they already got. Back downstairs Alfie was sitting on the floor meanwhile. With upright torso he was scrabbling over the carpet. I sat down to him, gripped a police car out of my backpack that I got for him as a present and contacted him. I talked to him and a discreet smile came back from when the police car started to make noise. This smile was so honest and kindly, that I already knew now, that the effort and the journey were worth it all.
And that he does not smile at everybody at once, made me a bit proud. Now Cameron, Alfie twelve years old brother came into the living-room. I had met him already on the house-inspection, but there he was busy with gambling. Now we made the distribution of presents! I fetched my suitcase from my room and gave it to Mark and Cameron. Now they were allowed to unpack! J They were speechless when took scarf after scarf and T-shirt after T-Shirt out of the suitcase. And I am still speechless also. Thanks a lot to all donors and to everybody who endeavored to make the chain longer. Maybe your item is part of a Guinnessbook entry soon. Before that Mark draped all scarfs and all jerseys, T-shirts and flags so, that they were photogenic. Together with Alfie, Mark, Cameron and me Rachel photographed the items.
Later Mark got some food from a Chinese restaurant. It was just very delightful. I noticed I was warm welcomed. Alfie was apparently very excited and did not get tired and sleepy. Well, sleeping is goofy when new people are in the house. Eventual you could miss something. No child in the whole world wants to sleep then. Why should it be different by Alfie? But likely every child’s eyes fall down when it gets later and later. So Alfie’s! Rachel put him to bed, and stayed with him until her were deeply sleeping.
With some beers we talked more about the life with Alfie, how they realized something is wrong when he was about 18 month, how they got the idea of Alfie Lund Fund and how it all started with the chain. Rachel and Mark told me about Alfie’s school and what he learns there. It was all very interesting. At something like 23:30 h we were all so tired that we went to sleep.
Saturday, second of May 2015
It was 09:00 am when I got up and went into the living room first. Alfie sat on the carpet already and watched TV. I drunk a coffee and ate Cornflakes and went to bath then. At 10 we packed a part of the chain into the car. We could not take the items I brought, with us, because we simply have had no time to knot them all together. No we were on the road to Blackburn.
Blackburn Rovers v Ipswich Town 3:2
Championsship – 46th matchday
02/05/2015 – 12:15 pm
Arraving at the stadium we parked our car just next to the ground. Mark and I went to the ticket-office and organized our deposed tickets. Here we met already two of Marks friends, and thier sons who came up from the region of Kent. Now we fetched Rachel, Cameron and Alfie and embarked us into the Directors Guest Lounge. They offered tea and coffee for free and beer for 3,60 Pounds. I took a beer! Occasionally we made a photo inside the stadium with Alfie and a player of the Rovers. I don’t know who that was. When I finished the beer it was time to enter the ground, for what we had to leave it first only to get in at a special wheelchair entrance. We sat in the first row of Ewood Park, and because it ran high about 80 centimeters behind the board, we were sitting literal on eyelevel with the greensward. The Ewood Park is home of the Rovers since 1890 and were renovated last time in 1995. On 22nd of 2007 Leverkusen played here 0:0 in the Europa League. As I was not able to go there at that time, it is all the nicer that I can tick off this “Bayer-ground” now.
For the Rovers the season has quasi gone and their main concern was to bow out from the fans into summer with a good result. On the contrary Ipswich had to catch minimum one point to ensure the playoffs. It got off well for the “tractor boys” as the Ipswich team is called sometimes, when they scored the 0:1 after two minutes after a corner kick. About 2.000 Ipswich fans have done a good show from the start on and now a bit more. This was really good, but typical for England: the away-end clamors and in the home ends is nothing. On the green the match turned, and Blackburn was better and had chances, of which they used two to score so that it was 2:1 halftime result. But the town-fans did not kept dump, but were still hopeful. In the middle of the first half I have got myself a pie. A cheese and onion pie! Very tasty! I will do that oftener in future.
In the halftime break it was time to present the chain to the spectators. Mark had already rolled it out. The part we had with us been about 35 to 40 meters long and was outweighing made of scarfs, but also a bib Bayer-flag was inside. Alfie, pushed by his dad, was now leading the chain which was carried by twenty random children. One time around the pitch! Firstly the stadium announcer did not say anything about the sense of all that, so most of the people just looked questioning. But at about half of our round the people stood up all of a sudden and started to applause. Also we were showed on the screen board. MECP2, Alfie and the chain were unveiled to the crowed. And the message seemed to reach to its goal. Also when we came to the away-end the people were standing and applauding. That moment gave me goosebumps and again, I knew it was worth it: the effort, the time and the money I have spent. I helped Mark to convolve the chain after we have finished the chain. The game went on then. Ipswich came better into the match, and the away end honored that. Anyway they caught the 1:3 after a failed defending. A defender wanted to nod the ball out of the penalty-area, but he hit a team-mate from whom the ball felt directly in front of the foot of a Rovers-player, who only had to shuffle the ball into the goal. Shit happens. Only now Ipswich woke up and created some good chances. But they needed a penalty to get the 2:3. At that time it was already the 82nd minute running, and the Ipswich-Fans were partying as they knew Derby was 0:2 down vs Reading at home. That would be enough! And when the 0:3 were intimated the playoffs were safe and the away end celebrated. After the final whistle, the result were 3:2, we watched a bit how the fans of both teams said good bye to their teams. Then we went back to the Directors Guest Loung. I made a short side-trip into the Rovers-store to get three pins. After a last pint in the Lounge we drove home.
After recovering a bit on the couch we brought Cameron and Alfie to their grandparents, that I got no know by this opportunity. Very nice people! In Germany was now kick-off time for Leverkusen v Bayern Munich. It is cruel if you can follow your team only in the internet, but the thing with Alfie has been more important for me this time. LEV did a good job and scored the 1:0 in the 55th minute. Rachel, Mark and I now started to the Blue Mallard, a very good restaurant next to the Leeds-Liverpool-Canal. Just in the moment I got served my beer, Leverkusen scored their second goal. Short after that the match was over. Good! Very, very good! Now, the evening must get good. And it got good! The dinner was delicate and we were able to talk about so much in a quite atmosphere. Actually the Lunds invited me! Many thanks for that! Following we went to a nice pub to have two or three more beers. Later at home we had a few more beers and talked on. Mark posted the pics of the Blackburn match on Facebook, and very soon the first comments and likes came in. By these I could show Mark and Rachel some off the people that donated most or did anything else special.
At 1:30 h we all went to bed.
Sunday, third of May 2015
After a morning-coffee Mark wanted to pick up the boys from the grandparents, but he learnt that they are still asleep. That’s way I did not meet Alfie and Cameron again and could not say good bye, because at 10:30 h we started for the second game of the weekend. Unfortunately without the chain, but Oldham have not responded on Marks applies.
Oldham Athletic v Petersborough United 1:1
League One – 46. match day
03/05/2015 – 12:15 pm
Oldham is located in Greater Manchester so the match was easily combinable with my flight in the evening at 20:00 h. Even the Tottenham v Man City match I would be able to watch in a pub nearby the airport.
At the ground we found a good parking space quickly and went straight to the stadium. Because Mark has a friend at Petersborough I tried to get in to the awayend with a trick but it did not work. The steward sent us to the ticket-office where we got two tickets for 20 Pounds each. 20 Pounds for a third division match is quite disgusting, but what shall we do? Well, at least hope, that the billion-pound deal of the premier league will make it a bit better…
Three stands of Boundary Park are awesome-oldschool: old, filthy, tight and nice. The fourth stand, opposites the main stand is getting rebuild in the moment. What for? No one knows, because the stadium will rarely be full. Also today there have only been 3500 people, about 250 of them from Petersborough. Atmosphere and match were bad over 90 minutes. There is not much to say about. Only that Oldham scored early to lead, and that Petersborough scored late to equalize. That’s it!
Mark meanwhile knew that his friend was in the away end. That’s way we asked a steward if we can change from the main stand into this to meet the friend. After a consolation with his boss, we were indeed allowed to change. We met the guy and talked a bit with him, while the boring game was running.
We got a bit amusement by some drunken guys that were behaving silly most of the time.
After the game we drove to the airport and searched a bar to drink one beer there. When that was finished, we said good bye very warmly.
Thank you very, very much to you, Mark, and to your family. It was an impressing weekend and fantastic to meet Alfie. His smile has also touched me and I will try to continue to raise awareness for MECP2 and your thing. You all deserve it! It is amazing how you are dealing with Alfie´s disorder and how you are carrying about him. Especially Cameron, with his twelve years does a good job. I am sure we will meet again. You are welcome to Leverkusen anytime.
In the bar I watched Tottenham v Man City and was a bit pissed about the 0:1, the only bad news of the weekend.
I passed the security and had then some Tortillas with Chili and sourcream in a restaurant. Then I flew home. At the airport I caught a train to Leverkusen with changing in Köln of course.
Completely satisfied I felt into my bed at 0:15 h.